Trudy Triumph's Neurogenic Bladder Blog

Who takes care of the Medical Frequent Flyers? (AKA – Please don’t give up on me; I’m still here!)

Lately I have been a “Frequent Flyer” – that is, with multiple doctor’s offices.  I have been in to visit my urologist, a “doc in a box” emergency care clinic last Saturday, and today, I am heading out to my family practice doctor.  WHY?

All because I can’t seem to get these bladder/kidney infections under control.

The pain is distracting, as I know many of you understand.  I have had back pain because of my kidney and bladder that seems to take over my body because it makes my whole body hurt.

What I have a hard time comprehending, digesting and determining is to whom do I go when the problem persists?  A few months ago I was in the emergency room due to a kidney infection.  No kidding, it caught me totally off guard; I thought it was an appendicitis, it hurt so much. Once in the emergency room, I was told to book an appointment with my “doctor”.

I automatically booked one with my urologist.  When I got there, however, my doctor was out of the office and the Tech lady asked me, ”Who is treating your kidney infection?”  I thought, “ummm, well I thought YOU were,” but perhaps I should have gone to my family practice doctor.  I was given some antibiotics and told to take them for a week.  I could tell however, just by how my urine smelled after the course of antibiotics was complete, though that I was still in trouble. I dutifully stopped taking them.  Sure enough, the pain and cloudy urine showed up several days later, again, now, on a Saturday.

I was told by my urologist’s assistant that if I have an urgent problem I need to go to a “doc in a box”: no more emergency calls or dropping off urine at the lab. So, I walked into a clinic and was given another antibiotic.  I hoped I got something that would do the magic.  I got the lab results today and the culprit turned out to be “E. coli”.

Today, I have an appointment with my family practice doctor.  I still have pain, and low energy.  I hope he can help me.

I guess the reason I am sharing this with you is that I am still really confused. I feel like the little puppy going around and asking, “Are you my mommy?”

I know that I am a “Frequent Flyer”; I am just not sure who to go to for my various medical needs. It scares me to death to have to go to different people for my “health basics”.

I understand that additional and new strains are being put on our doctors, now, so I am trying to be patient and wait until new systems are put into place.  Until then, do I need to get sicker and sicker because I am a medical headache for the US medical system?

This morning I was reading the news online and read an article through the BBC about how good the UK Health Care System is for “End of Life Care” – the best rating of any medical system in the world [see http://www.bbc.com/news/health-34415362].  I happen to know, through readers of this blog, that getting to see a urologist takes a long time and that continuous care from that urologist is impossible, at least for those of you who have written to me.  The urological patients are referred to “Continence Nurses” after diagnosis. I’m not inferring that the care provided by these dedicated nursing staff is inferior, just that access to the urologist themselves is blocked after they have been referred. I do hope it is comforting for my friends in the UK to know that End of Life issues will be so easy for them, at least.

How about this wonderful life?  The one that we only have one to live? I still see myself as a healthy person, even though I have a chronic illness. I have a long life to live, many things to do . . . .

HOLD THE PHONE, NOT SO FAST!!  Is this where we are heading? How about when what I need is NOW (or yesterday)? Medical costs aside, I want quality care now and I do not want a system like the UK, thank you very much!

Have you had a hard time finding consistent medical care?  Please share your story with us.

We are better together.

Trudy

 

 

 

Let’s talk about Holding your Urine

Not long ago I received this comment from the Ask a Question part of the blog. Photo #4

 Dear Trudy.

I’m a 23 years old male who thinks I have neurogenic bladder, yet not diagnosed. Here is my story, about 4 months ago I took shower with cold water and the next day was like a hell, I went to toilet like 20 times, but nothing happened during the night, I mean I didn’t wake up to urinate. Anyway the following month was up and down, some days were good, some days weren’t.

Two months after that, I made very silly things due to my social phobia. I cannot go toilet in public spaces, actually it is very hard for me to go toilet except, my house. During those days I had to travel a lot, and I had to use public toilets, but I couldn’t. I held my urine like 4-5 hours for first day, later 2-3 hours and for 1 week all this time I was holding my urine. When I got back home, after all this incidents, I felt weird on my bladder area and urine flow. My urine was not like how it used to be and sensation of urge to urinate has decreased. I went to doctor and he tested me with a urine flow meter and said yes there is a problem.

I don’t think it is a bladder problem. I think it is neurologic bladder, cause sensation is disappeared now.  I am able to go when I got the toilet,  but in morning I can’t feel urge to go to toilet. I start to urinate after 5-8 seconds. I hope you can give some idea about what I have and how I am going to manage it. 

Sorry for my English, I’m not from UK or US.

Best Wishes, Utku

Dear Utku,

For years had symptoms of Neurogenic Bladder not understanding what that was..  But a turning point for me was when I got very sick with bladder problems.  Neurogenic bladder is a bladder problem.

I worked at a school and toileting breaks were few and far between.  So, at times, I was unable to use the toilet when I felt the urge.  I wanted to be a good employee so I ignored the urge to empty my bladder and in doing so I caused more problems for myself.  I became very sick.

I was pressing my urine out. That act should have been a clue that something was wrong.  I was relatively comfortable and in a holding pattern, just like you.  I thought I would be able to go on for years with clear urine and dealing with a broken bladder. I finally went to a urologist because of the extreme pain. There was blood and an infection in my urine.

The reason we should not ignore these symptoms is because the urine back up can harm our kidneys. We need to be kind to our kidneys.

I am sorry about your inability to use the toilet when you are out and about.  It is very important that you try to empty your bladder when you feel the urge.  If you are like me and cannot feel the urge to urinate.  Try to watch the clock.  Try to go every 3-4 hours. It is best for your bladder and kidneys. Please see a doctor about this.  Holding urine can cause a lot of problems.

Thank you for your question. Please know that you are not alone. Get the professional help you need.  You can even show this blog post to your doctor if you think it will help you better explain your concern.

Best wishes to you and God Bless. Trudy

Here are some links to learn more..I hope they help…

Dangers of Holding Urine For Too Long

Holding your urine

Do readers have suggestion for Utku?  How do you push past the fear of using a public rest room?

Limericks from an 18 Year Prostate Cancer Survivor Guest Author Jim Yount

jim 3

WHEN I COULD NO LONGER PEE PAST MY TOES

MY DOC PUSHED A TUBE UP MY HOSE

I KNOW HIS INTENT

BUT I KNEW WHERE IT WENT

WHEN IT’S TIP CAME OUT MY NOSE

 

Do I have a treat for you. Finally guys it is your turn. Because of Google Analytics I know that most of my readership are men so perhaps you are reading this and you are incontinent because of prostate cancer. Please enjoy a guest blogger, Jim Yount.

 

Are you interested in being a guest blogger? How about joining our Circle of Friends?

 

Dear Trudy,

I am enclosing the material we discussed. I am an eighteen year prostate cancer survivor. In step with your blog “TrudyTriumph.com” I wrote the limericks over a period of several years post-surgery and radiation treatment. I did not observe humor in the hospital nor my urologist’s office, so I made an effort to give some laughter from my perspective to my doctors and their staff. I would recite a limerick to them about their treatment, exams, and their side effects of their efforts. I figured it was better to laugh that cry.

Some of these are pretty raw and exaggerated, which is the nature of limericks. They are pretty chronological in order and recorded for copy-right protection.

Please enjoy and smile,

Jim Yount

 

UROLOGY RADIO ONCOLOGY

 

SANDRA, SHARON, AND DEBBIE TOO

WITH MARKERS RED, WHITE, AND BLUE

DREW A MAP ON MY BUTT,

SO THEIR PHOTONS COULD FIND THEIR WAY THROUGH

 

IN A ROOM WITH A NICE COOL BREEZE

AND MY PANTS PULLED DOWN TO MY KNEES

MARY JO SAYS LIE STILL

I SAY THAT I WILL

BUT WHAT SHOULD I DO IF I SNEEZE?

 

DEBBIE, JANET AND THE BENCH WARMER, AND OLIVIA

TALK TO ME ABOUT TRIVIA

THEY SAY WITH A BOIG SMILE

HANG AROUND HERE A WHILE

WE’LL ZAP YOUR C-A TO OBLIVIA

 

TOM I’VE ONLY ONE WEEK TO GO

ALTHOUGH TIME GOES BY PRETTY SLOW

TO GET RID OF THIS ROT

I THANK YOU A LOT

YOU’VE LENGTHENED MY LIFETIME I KNOW

 

I’M FEELING MUCH BETTER THESE DAYS

THANKS TO YOUR CARING PROFESSIONAL WAYS

AND TO YOUR FINE STAFF

ALWAYS QUICK WITH A LAUGH

I THINK YOU SHOULD GIVE THEM A RAISE!

 

THERE WAS AN OLD MAN FROM TEMPE

WHO WAS FILLED WITH JOY AND GLEE

WHILE HE WAS TRANQUILLY DREAMING

HIS DOCTOR WAS REAMING

SO NOW HE CAN ONCE AGAIN PEE

 

I CALLED UP MY DOCTOR TODAY

ABOUT THE RESULTS OF MY LAST P S A

HERE’S WHAT HE SAID

“JIM YOU ARE NOT DEAD”

OH BOY, DO I LIKE IT THAT WAY

 

THERE WAS A MAN FORM PAH RUMP

WHO WAS LEFT WITH A NAUGHT BUT A STUMP

WITH HIS DOCTORS PRESCRIPTION

AND NURSE KAREN’S DESCRIPTION

HE PUMPED UP HIS TRUMP FOR A HUMP

 

IN A DOCTORS OFFICE IN WHICH I TAKE STOCK

NURSE KAREN WORKS FOR MY UROLOGIST DOC

SHE HELD ONTO ME

WHILE MY DOC HELPED ME PEE

BY SHOVING A STICK UP MY COC

 

WHEN I COULD NO LONGER PEE PAST MY TOES

MY DOC PUSHED A TUBE UP MY HOSE

I KNOW NOT HES INTENT

BUT I KNEW WHERE IT WENT

ITS TIP CAME OUT THROUGH MY NOSE

 

January 2010

 

THERE WAS AN OLD MAN FOR LAKE PLACID

WHOSE DEMEANOR WAS INCREASINGLY ACID

SINCE HIS SURGERY WENT ASCEW

HE COULD NO LONGER SCREW

BECAUSE HIS ORGAN WAS FLACID

 

THERE ONCE WAS A WOMAN NAMED ALICE

HOW GAVE HER HUSBAND CIALIA

IF SHE ONLY KNEW

SHE’D TURN BLACK AND BLUE

FROM THE BANGING SHE GOT FROM HIS PHALLUS

 

FOR A BIOPSY OF MY PROSTHETIC MASS

TRANQUILIZED, THE DAY QUICKLY DID PASS

ALL I REMEMBER OF THAT DAY IN DECEMBER

IS SOMEONE’S COLD HANDS ON MY ASS

 

LITTLE WILLIE WAS ONCE A GO-GETTER

BUT LATELY HAS BEEN LIMPER, SORER, AND WETTER

THIS STUFF THAT I HAVE

CALLED DR. NAIR’S SALVE

HAS MADE LITTLE WILLY MUCH BETTER

 

I KNOW A UROLOGIST NAMED INGER

WITH WHOM I WISH NOT TO LINGER

BUT HE’S AS GOOD AS THEY COME

FOR A GUY WITH NO THUMB

WHO CAN PRACTICE WITH ONLY ONE FINGER

 

AND I KNOW WHERE IT GOES!

 

JULY 2011

 

MY DOC SENT ME TO ONE OF HIS CRONIES

WHOSE TREATMENTS ALL TURNED OUT TO BE PHONIES

HE SENT IN A YOUNG LASS

FOR A SHOT IN MY ASS

WHICH MANAGED TO SHRIVEL UP MY COJONIES

 

THERE WAS ONCE A UROLOGIST NAMED KELLY

WHO GAVE ME A SHOT IN THE BELLY

“IN MIRACULOUS WAYS

IT WOKS IN SEVEN DAYS”

SURE ENOUGH, IT TURNED MY WEE WEE INTO JELLY

 

ROLF PANKE IS MY HARD WORKING DOC

HE TREATS PATIENTS ALL ‘ROUND THE CLOCK

AS CHRISTMAS DRAWS NEAR

DOCTOR ROLF, NEVER FEAR

SANTA ILL FILL UP YOUR SOC

 

 

 

 

 

Author Interview, Beyond Embarrassment, reclaiming your life with neurogenic bladder and bowel, Part 2


Q. Do you have a mentor for writing publishing and speaking, and if so, how did you get that mentor?

A. I would have made so many mistakes without my mentors in the various steps with this book. My editors and book coaches have mentored me. Before I made a decision to find a publisher I joined the Palm Springs Writer’s Guild and I was paired with an author of multiple books, Jim Misko. He offered invaluable advice to keep me away from scammers in the publishing world. I also have a public speaking mentor for Toastmasters, Debbie O’Brian.

……………………………………….

 Q. What do you wish you knew before you started?

A. I wish I knew how expensive it is to get a book published.

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Q.How do you balance writing and home life and a social life?

A. I think being a writer is a different breed in itself. I am lucky because my family is patient with my sneaking off by myself to write. I know I am a thinker and I like to analyze things. I also like to carry a notepad around so when I think of things I can remember them by writing them down. Social life is not overly important to me.  I enjoy my friends and family but I also like to write.  I try to give each quality time.

……………………………………….

Q. How can I buy a book?

A.Before December 1, there will be an opportunity to pre-order the book at a discount. The book will cost $16.95 (Actual price) after December 1. You can pre-order the book for $16.95 no tax, free shipping before December 1 from my website www.trudytriumph.com I also have an author page, amazon.com/author/joannelake you can pre-order there too.

 

Afterwards the cost will be the normal price plus tax and shipping.

 

After December 1.  There will be an opportunity to buy from Amazon, my web page if you live in the USA or order from major on line book stores.

…………………………………………………..

 Q. How is the world a better place because of your book?

A. I had two major goals in writing this book. The first one was to put together a how-to manual. A guide to live easily with neurogenic bladder and bowel.  Often times sufferers are home-bound and find it difficult to venture out.  I wanted my book to act as a springboard for others to go out and live a great life.  The other goal was to get people to talk about bowel and bladder issues in general.  So often this is a taboo subject and because of this there are many that do not get the medical help they need before things get really out of hand.

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Q. How can we as fans help you get the word out?

A. When we are ready please write a short review on Amazon or another e-trailer site—good, not so good, or bad. Remember honesty is the best policy.

The book will be ready for preview in a few short months.  If you are interested in a preview copy please contact me at TrudyTriumph@gmail.com

Help spread the word about the book on your existing platform, especially during the week of December 1, 2015.  If you blog I have materials I can send you.

Share ideas with me and brainstorm additional ways we might further expose the message to an even greater audience.

Thank you,  JoAnne Lake aka Trudy

Industry ‘must do more’ to Improve Urinary Catheters

CathetersI saw this article on BBC News and need to pass it on to you.  Please read it.

Industry ‘must do more’ to improve urinary catheters

When I was first diagnosed with urine retention I was instructed  to buy reusable red rubber catheters.  After the use of the catheter I was instructed to wash it with dial soap and let it air dry on a paper towel.

Only to find out later that other countries and even some major medical facilities

DO NOT RECOMEND REUSING INTERMITTANT CATHETERS BECAUSE OF INFECTION.

I think we as a community need to demand better care.

OK that was my soap box.  Have a safe day.

Beyond Embarrassment, Author Interview


Photo #4

The Theme of Beyond Embarrassment is shed the shame and stand proud!

Questions & Answers Part 1 of 2

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.
……………………………………….

Q. How long did it take to write this book?

A. About three and a half years.

……………………………………….

Q. Where did you get the information and Ideas for your book?

A. I read books, I looked things up on the internet, I kept a journal and I joined support groups.
I got some of most helpful ideas from support groups. As an educator I need to break daily lessons down for the students to understand. I found I was doing, so in my mind, as I tried to live my life and daily cope with this disability.  As I came up with solutions for myself to make my life easier I wrote them down in my blog.

……………………………………….

Q. What do you like to do when you are not writing?

A. I enjoy my family and friends. I like to hike, movies, and reading.

……………………………………….

Q. What was one of the most surprising things you learned in creating your books?

A. I was happily surprised by the wonderful people I met that share my disability of neurogenic bladder and bowel. I was also surprised by the fact that I went from sheer fear and dread and complete shame to becoming beyond embarrassment in living with this condition.

……………………………………….

 Do you have any suggestions to help me become a better writer? If so, what are they?

Brainstorm, edit and read, read, read.

……………………………………….

As a child, what did you want to do when you grew up?

At a very early age I knew I wanted to teach. I also wanted to be an author. My father is a published author. He inspired me to write. As a high school student I remember looking up at the ceiling of the Library of Congress and promising myself that someday I would have a published book there someday.  By the way, my Library of Congress Number is 2015908628 if you want to look it up.

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Q. What was one of the most surprising things you learned in creating your books?

How persnickety some agents are… I am self-published because I could not sell my idea. Many were shocked by the topic which was surprising to me since toileting is a daily activity for everyone. The other surprise is how long I needed to work on this project by myself before I got others excited about the idea.

……………………………………….

If you could cast a character with neurogenic bladder and bowel in the Hollywood, who would play your character?

A. I have often thought that it would be cool if more authors would write in a character with neurogenic bladder and bowel. I have even offered on my Twitter and Facebook and LinkedIn accounts to help other authors to develop a character with this disability. Now to answer your question. How about Reese Witherspoon in a Legally Blonde 3. After marrying her hunk husband she has a rough vaginal delivery and ends up with no bowel and bladder control. She is still adorable and completely with it as she learns to navigate her life with incontinence. Some light humor, but mostly inspiration.

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I will post the rest of the interview next week.

 


 

End of the Month Stress Out Dealing with Neurogenic Bladder Supplies

There is always a time about mid-month when I see my medical supplies dwindling. The package is emptying and I know that my next box will arrive in a week or so. When anticipated arrival does arrive I say a quick prayer of THANK YOU GOD because I know that that box contains lifesaving supplies for me.Or what about the moment the pharmacist says that is the end of your refills.  Does one call the doctor imminently for a new prescription or wait and run the risk of not having what you need when your doctor is out of town or the office is closed? These are real situations that those of us with chronic illnesses find ourselves in.

Just this month I experienced  this drama, a frustrating situation because when the pharmacist told me that I had no more refills I notified my doctor’s office.  They mistakenly thought that I was asking for more mediation.  The problem for me is that I did not need more medication at that time, I was just planning ahead. Now I have a compounded liquid antibiotic that has a short shelf life in abundance.  My husband thinks I should just buy it, I will.  I appreciate my doctor and I will just pray that when I use this medication that it will still be good. Besides if I do not use it I will also have my insurance company to deal with because like all of the medication and devices in my life there are major costs involved.I have doubts that the insurance will pay for the needed drug twice.

It is a good thing I have a doctor’s appointment next week.  I am courteous what the doctor thinks I should have done.Should I order when  am desperate or notify the doctors office that my prescription had run out?

There are many folks that save up for the big one. The big earthquake, the volcano eruption or heaven forbid the dirty bomb. Very ugly scenarios for sure. I know during the Y2K scare I loaded up on toilet paper, Clorox bleach, flour, sugar, and canned goods. It all came to naught but I was prepared. I still want, from the bottom of my heart want to stock up on medical supplies.

I am unable to stock up on my medical supplies. For those I am truly dependent on the mail delivery system. The company that produces them. The airplanes or trains or automobiles that transport them and then the blessed delivery man that drops them off. We are also dependent on the insurance company monthly hand-out.

I am not the only individual in this predicament. Many of us rely on medical supplies. I rely on catheters, a compounded antibiotic. Some others rely on insulin, wound care supplies, special foods, and so many other lifesaving substances.

It would be proper for the insurance company to let us have a little extra for an emergency? We carry spare tires in our cars. We have back up batteries in our smoke detectors. We have substitute teachers in our schools. We dam rivers for a reserve water supply. We carry extra gum in our purse just in case we have to whisper in an ear. I have alternative shoes for each outfit.

Perhaps it is a “consider the lilies of the field” situation.  I need faith.

It is a good thing I have a doctor’s appointment next week.  I wonder what the doctor thinks I should have done? Order when  am desperate or notify the doctors office that my prescription had run out? I am sure you get my drift. How do you feel at the end of the month?

Exposure of Heavy Metals and Neurogenic Bladder, Part II

This is the second post about heavy metal poisoning and neurogenic bladder and bowel. This is a post you might consider giving to a young person that thinks smoking cigarettes makes them look cool.  Cigarette smoke is an excellent source of heavy metals and one of the sure ways to bladder cancer.  Perhaps a young rebel might consider how cool it is to need to wear diaper or have bag strapped to a leg to catch the urine because there bladder is gone.

Heavy Metals Part 2

This is a continuation of my blog about heavy metals and how unknowingly we can be exposed and how that exposure can cause nerve damage that can lead to neurogenic bladder.

Here are some examples of common exposure. After dry cleaning clothes I try to air them out, but mostly I try to not wear clothes that need to be dry-cleaned. I always thought it was because I did not like the smell, now I understand that I am perhaps a bit more physically sensitive. I like to quilt and was given some old wool. I got sick before I discovered it had been dry-cleaned.

I did not realize that old tires could pollute the garden. It was tempting for me to use old car tires to warm up the soil for bigger plants. Now I know better to use them. Sure they can make your tomatoes grow like gangbusters, but the toxins will leach out and cause heavy metal exposure. Mascaras can have some heavy metals. There can be arsenic in mascara. To help me avoid this, I have permanent makeup on my eyebrows and eyeliner. Works for me!

A lot of health foods and supplements are really from China and packaged in the USA. Recently, I bought a veggie protein powder at a reputable health food store. Upon inspection I discovered it was manufactured in China. It is amazing to me that we need to pay attention to this. Packaged in the USA is not the same as made in. Watch out! It is common knowledge that the FDA does not have the same standards for supliments as it has for prescription drugs. So if we consider that other countries do not have the same growing standards that we have in the United States then buyer beware.

Some of the bad metals are lead, cadmium, arsenic, aluminum, and mercury. Heavy metals are heavier than water. They are found everywhere: in our water, cigarettes, air, and food. At times chemicals and fertilizers used to grow our food include some heavy metals, so our bodies are exposed to plenty of them. Since I grew up in an agricultural community, I was surrounded by fields and exposed to some of the spray from crop dusters flying overhead. It is unfortunately easy for our systems to be overcome by the presence of heavy metals. It is not a matter of if we have heavy metals in our bodies, but how much.

Toxins can have a drastic effect on the bladder. Exposure to heavy metals may cause a variety of central, peripheral, or autonomic nervous system injuries. Heavy metals such as arsenic can be found in drinking water and are known to cause many cancers, including bladder cancer10. Cigarette smoking is known to generate more than forty-five known or suspected chemical carcinogens that can lead to numerous health problems, including bladder cancer11.

What all of this boils down to is that heavy metals are everywhere and that some of us are a little more sensitive to heavy metals. I know for a fact that I fall into that catagory. And exposure to heavy metals can lead to nerve damage which can lead to neurogenic bladder and bowel.

 

Recourses

 

Heavy Metals

 

  1. Carnahan, Jill M.D., “MTHFR gene mutations and glutathione production,”
  2. posted Oct 5, 2013, accessed April 9, 2015, http://doccarnahan.blogspot.com/search?q=MTHFR.
  3. Mink PJ, Alexander DD, Barraj LM, Kelsh MA, Tsuji JS., “Low-level arsenic exposure in drinking water and bladder cancer: A review and meta-analysis,” Regul Toxicol Pharmacol. 52, no. 3 (2008 Dec): 299-310. Epub 2008 Aug 26. Review. PMID: 18783726. doi:10.1016/j.yrtph.2008.08.010. 
  4. 11. Fowles J, Dybing E., “Application of toxicological risk assessment principles to the chemical constituents of cigarette smoke,” Tob Control 12, no. 4 (2003 Dec): 424–30. PMID: 14660781 PMC: 1747794. doi:10.1136/tc.12.4.424.

 

Exposure of Heavy Metals can cause Neurogenic Bladder

Heavy Metals Part 1

After my diagnosis of neurogenic bladder I was offered the opportunity to be in a Pathway Genomics study through Harvard University partnering with Bingham Young University. It was a personalized DNA test. The goal of the test was to study what patients did with the knowledge of their genetic predisposition. Would they make healthy eating or exercise choices ? Would they work to keep healthy knowing that in some areas they needed to work a little harder that others? I found the information very beneficial. Because of this test I learned a new thing about myself. I have a double MTHFR mutation. So, as I am counting down  causes of my neurogenic bladder, I have another one to add to the list. A person gets two copies of each gene, one from their mother and one from their father. So, I won the big grand prize: two mutated genes. Reading through explanations of this genetic condition helps me to understand how it actually affects my body in  It is important for me to understand the physiology of heavy metal metabolism so I can be careful day to day and alert my doctors of this otherwise “hidden” condition. For example, if I were to get cancer, I could not want to take some chemotherapy drugs or at least look at other options because they if they contain heavy metals it would lead to the added burden of heavy metal toxicity on my body.

MTHFR

A MTHFR double mutation opens me up for needing to consider heavy metals as a possible culprit of the damage sustained to my sacral nerve. Glutathione is the body’s primary natural antioxidant and detoxifier; it is key to helping the body rid itself of toxins. A MTHFR gene mutation can make you susceptible to illness by affecting your ability to make glutathione. “People with MTHFR anomalies usually have low glutathione9,” making them more susceptible to stress and less tolerant to toxic exposures. I actually knew I was extremely sensitive to various consumer products long before my DNA test. Over the years, many cleaning solvents have made me sick. I use vinegar and water to clean my house. This was something my mother used as well at times. I think it is interesting how we as humans have so many choices of products and at the time we do not understand why we can react so pointedly to one product over the other. If your body lacks adequate glutathione, consider adding it along with methylated B vitamins to your daily diet, since they help fight toxins your body encounters daily. Consider incorporating antioxidants into your diet to fight oxidation products, which are by-products of naturally occurring chemical reactions occurring within the cells of your body that can build up and contribute to cell death and aging. Many foods contain high levels of antioxidants, including blueberries, strawberries and certain kinds of apples. Consider increasing these foods in your diet, as they have numerous health benefits, including preventing or delaying cell damage. Because of space I will have a continuation of this article next week.  Next week I will offer some examples of how easily we can be exposed to heavy metals.

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)

 

JoAnne Lake has written from a unique vantage point as she has both the condition and a vast knowledge of that condition.

She writes a reliable guide and a fresh prescription for those who are living with the diagnosis of neurogenic bladder/bowel and for those who suspect they are.

It 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 I will refer my patients to read this excellent book.

Dr. Kathy Matteson BS MN FNP ND, Medical Provider, Seattle, Washington

 

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Facing life with an enduring affliction, especially one that carries intimate secrets about indiscreet body functioning, is weaved with a very an emotional component. JoAnne tells her story with honesty and transparency, with a generous heart to help others. She addresses the grief experienced from the loss of a normal life, lack of desire by those close to her to understand her condition as a result of their own embarrassment, the shame and isolation, all of which can lead to feelings of hopelessness and depression. This book is a must read for anyone facing these challenges. As you read, JoAnne will become a trusted friend that you be grateful to have along on your personal journey.

Phyllis Oswald Rogers, MA, Licensed Mental Health Counselor

 

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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

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A “very powerful and important book . . . an impressive achievement.”

Jonathan Kirsch, Attorney, Trademarks, Publishing, and Copyright Law

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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.

 

 

 

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