Saturday, May 28, 2016

Why I No Longer Believe That Monsanto Is The Devil

On Saturday, May 21st (March Against Monsanto Day) I was walking through the Monsanto Research Center in Chesterfield, MO., not outside of its gates.




Since participating in multiple farm tours with the Illinois Farm Families City Mom program, my outlook on farming and agriculture has changed - drastically.  I flew into St. Louis with an open mind, yet knowing that I was about to cross the threshold of a company that I associated with trying to take over the world's food supply; a company that was sue happy with farmers, destroying entire communities in the process; a company that knowingly manufactured cancer causing chemicals; a company whose mutant plants were causing everything from allergies to autism...pretty much a visual picture of a skull and crossbones is how I would have described Monsanto.

I'm the person who got maybe 80 pages into the book The World According to Monsanto and couldn't continue because it was raising my anxiety level and messing with my sleep.  I waited an additional month before I forced myself to watch the documentary.  I was the person who "liked" the social media pages and groups that created the memes and posted the articles that perpetuated my misguided notions about not only Monsanto, but farming and agriculture as well.

Do you know what happened to me at Monsanto?

I was put at ease

"Oh, but you saw a dog and pony show."
"Oh, but they only told you want they wanted you to know, not the truth."
"You're a fool!"

Sure, why not and yes to all of that.  Because you know what, I know that those comments are going to continue to come.

Here's what I learned, though -


World Population vs. Food Supply

In 2011 (5 years ago), the world population hit 7 billion people.
The world population by 2050 is projected to hit 9 billion people.
Currently, farmers are not producing enough food to feed the current population.  Let me say that again, THERE IS NOT ENOUGH FOOD BEING PRODUCED.  Additionally, food is not evenly distributed leading to malnourishment and hunger.   
What is Monsanto doing to help this?

"We are working to double yields in our core crops by 2030. 
These yield gains will come from a combination of advanced plant breeding, biotechnology, and improved farm-management practices."


How?

Well, let's talk soybeans, shall we?



Monsanto is working on increasing the soybean yield from 3 beans per pod to 4 beans per pod.  What exactly does that mean?
1 more bean per pod over 1 acre will equal 
1 additional bushel at harvest

That means more food.


Let's talk drought tolerant corn?



Monsanto joined the Water Efficient Maize for Africa (WEMA) partnership to bring drought tolerant and pest protected seeds to improve food security to more than 25 million people in Sub-Sahara Africa.  

Here is a wonderful Q&A post that illustrates how this is impacting world hunger (source http://discover.monsanto.com/posts/behind-the-seeds-of-wema-2/)
     Q. World hunger is a growing concern. How many lives
would you estimate that the WEMA partnership has                 impacted?
     A. With the deployment so far of 367 tons reaching 36,700       farm-households in Kenya, if we assume an average of 6                 people per household, the products in Kenya alone would                 have impacted at least 220,200 lives since the deployment to       farmers started in September 2013.
Again, more food...

GMO Seeds - What I Thought vs. Reality

What I thought - probably like some of you, was that Monsanto was injecting individual seeds with questionable chemicals that would mutate the seed without ever taking my (or your) health or quality of life into consideration when doing so.

That's not the case, though.

First, let's start with what a GMO is:

"A genetically modified organism is created by taking a beneficial trait, like insect or disease resistance, from one living thing and introducing it into another to help it thrive in its environment. They are often referred to as GMO's" (Farm to Plate: Learning How Food is Grown - Monsanto, website link here)

"Genetically modified organisms (GMOs) can be defined as organisms (i.e. plants, animals or microorganisms) in which the genetic material (DNA) has been altered in a way that does not occur naturally by mating and/or natural recombination. The technology is often called “modern biotechnology” or “gene technology”, sometimes also “recombinant DNA technology” or “genetic engineering”. It allows selected individual genes to be transferred from one organism into another, also between nonrelated species. Foods produced from or using GM organisms are often referred to as GM foods." (World Health Organization, website link here)

"an organism or microorganism whose genetic material has been altered by means of genetic engineering." (Random House Dictionary)

How is the seed modified?
Through an agrobacterium transfer where the parent plants' DNA is modified with the gene they want to add and then the plants are propagated.

What GMO seeds allow for farmers is the ability to minimize damage to crops from weeds and pests. What this then allows the farmers to do is limit their use of herbicides and pesticides to improve their environmental impact, on all of us.  It also leads to no-till farming which improves soil health and water retention. It also helps cut farm costs by reducing the use of insecticides on insect-resistant crops and water usage during droughts with drought-tolerant crops.

And, you know what?  GMO's aren't every food.  Currently there are NINE crops available commercially:
  • Corn *Monsanto produced seed*
  • Soybean *Monsanto produced seed*
  • Cotton (used for oil) *Monsanto produced seed*
  • Alfalfa (used for animal feed, not those yummy sprouts on your sandwich) *Monsanto produced seed*
  • Sugar Beets (used to make refined sugar) *Monsanto produced seed*
  • Canola (used for oil) *Monsanto produced seed*
  • Papaya
  • Squash *Monsanto produced seed*
  • Potatoes
And, keep your eyes on rice - enriched with beta-carotene (Vitamin A), which should be coming to market soon.  Why GMO rice?  30% of the world's population is deficient in iron according to the World Health Organization.  Want more information, check out this link Golden Rice Project.

I'm not sure about you, but that is not all the food that I eat, and I'm a pescetarianism.  I don't think that I've ever had a papaya before in my life.  I'm just saying, I'm not worried about this.


Roundup - What I Thought vs. Reality

What I thought - it's a cancer causing chemical that is poisoning not only humans, but the earth.

You too, huh?

Well, here's the deal, IARC (International Agency for Research on Cancer) is an agency that looks at cancer causing hazards.  It does not evaluate actual human risk, that's what regulatory agencies do.  In 2015, IARC claimed that glyphosate was “probably carcinogenic to humans”.  This classification (2A) is also held by those who consume red meat, work a shift that involves circadian disruption, and if you are a hairdresser or barber (here).  

*Sidebar* I don't know about you, but I used to eat red meat, I worked the third shift, and I grew up in a beauty salon...and my mom used Roundup.  And today, I'm okay.  Just saying.  

And, actually, Reuters did an investigation on how IARC confuses consumers (here).  And, in May of 2016 the Joint FAO/WHO Meeting on Pesticide Residues (JMPR) concluded that “glyphosate is unlikely to pose a carcinogenic risk to humans from exposure through the diet". (here).  Oh, and here is what Monsanto has to say about it (here).

So, no.  Roundup does not cause cancer. The United Nations Food and Agricultural Organization says so and so does the Wold Health Organization.  

And, there were so many other really, really good questions asked while I was at Monstanto.  

Bees - you actually need bees to pollinate crops.  Monstanto is not killing them off.  While on the tour, we learned that there are multiple factors contributing to the bee population decline including the varroa mite, pesticides, weather and disease. Here's some additional information to look at. 

https://www.youtube.com/watch?v=kWbUplDgSNM&feature=youtu.be
http://www.monsanto.com/impro.../pages/honey-bee-health.aspx
Militia - Monsanto does not have a militia.  They also did not hire Blackwater.  "What we did do was hire an organization called TIS as a consultant to understand some of the atmosphere in which employees were working.  It's especially important in some of the global markets we are in to know what is happening. As a company we place travel freezes, etc." 

http://monsantoblog.com/.../monsanto-and-blackwater-is.../

To close out this very long blog post about my visit to Monsanto, I just wanted to let you know that it was not the very cool "Monsanto" salad shaker that swayed my opinion about them.



The tour and the Monsanto employees answering our questions did.



You can connect with Monsanto via social media this way
Website
Blog
Facebook
Twitter
Pinterest
YouTube

Here's a reference list of farmers and scientists who are blogging that Janice sent to me when I asked for additional resources to help debunk the loud "anti" voice that is out there.  I wanted to pass it along as a resource for you.  From my own experience, the "anti" voice is very loud.  It fueled my negative notions of farming and agriculture prior to going on tours as a City Mom.  Hopefully they will either give you a different perspective to think about, or help strengthen your beliefs about agricultural.

Janice's list
http://janiceperson.com/blogs-i-read/total-list-farm-blogs/

Her favorites in the farming community (and why)
http://www.askthefarmers.com/ is a group of farmers covering all sorts of crops and topics they do some great memeshttps://www.facebook.com/AskTheFarmers/?fref=ts
http://illinoisfarmgirl.wordpress.com/ -- Katie came last year with the group, she’s not far from Chicago
http://agricultureproud.com/ is by a guy who’s family is in the cattle business
http://beyerbeware.net/ is a friend near Indianapolis who shares family & food
http://www.cornbeanspigskids.com/ is in Iowa & pretty self explanatory
http://licensetofarm.com/ is a documentary farmers in Canada produced
 
Her favorites in the science community (and why)
http://www.biofortified.org/  is a group of scientists… sometimes it is too in-depth but I find @geneticmaize is a great resource to explain more on my level and she’s one of the founders
http://appliedmythology.blogspot.com/ is a scientist who was in ag chemistry
https://www.facebook.com/scibabe/ is an off-beat scientist
Groups like League of Nerds are podcasting about the topic https://www.youtube.com/watch?v=g0PDtiOCb-I



Saturday, May 7, 2016

Mother's Day Without My Mom

I honestly didn't think that I'd loose it.  Really.

I remember sitting at my parents dinning room table in Texas across from my Dad and younger brother on July 2, 2015 thinking "December is really going to be tough."  With it not only being my Mom's birthday month but also Christmas being her favorite holiday, I mentally prepared myself for five months down the road.

December was going to be tough.

My Mom died on July 1, 2015 of sigmoid colon carcinosacoma that had metastasized to her liver one year and three months after diagnosis.

It didn't hit me that my Mom was really gone until October 28, 2015, when I found myself lying on the MRI table getting my left knee scanned.  As I stared up at the drop ceiling tiles that had been re-done to look like a calming sky scene I realized that my Mom was dead.  My reliable source for all things medical related was gone.  I couldn't call her after my scan and send her the files via email for her to review to get her opinion.  And, I felt alone in that moment.  Utterly alone.

The MRI was just a drop in the bucket of the other medical procedures I had had done in the previous three months.  From my yearly pap to two internal ultrasounds to a mammogram to a laparoscopy, hysteroscopy with myosure novasure ablation with a polyp being removed that ultimately diagnosed my stage 4 endometriosis, to a colonscopy and urodynmics exam, to the suggestion of treating my stage 4 endometriosis with the chemotherapy drug Lupron, and taking two months to digest that information and search for alternatives, it was baptism by fire for me as I tried to navigate the medical world without my Mom to bounce all of it off of.

And, after every procedure and treatment I just kept telling myself that everything was going to be fine.  Because if I didn't, I knew I would loose it.

I lost it last night.

I didn't expect to.  Like I said, December, that was going to be tough.  Not May.  Not Mother's Day weekend.  But, I'm realizing again, as I arch this weekend, how alone I feel.

My Mom and I didn't have a typical Mother-Daughter relationship.  My Mom was not the typical Mom.  But, she was there and she did her best.  She was supportive and loving and tough.  And all of it made me who I am today, and I'm so grateful for that.  Even with a decade long gap of estrangement between us, the last few years that I got the spend with her where nothing unlike the years previous to our estrangement.  She was my Mom, and I loved her.   She was supportive and loving and tough.



It started last night with the third track of the 2015 Chicago Listen to Your Mother soundtrack.  I know, you're thinking "vague much?"

It's "I Lived" by One Republic -



Dude, I can belt out that song like it's no ones business.  Except...except for the line

Hope that you fall in love, and it hurts so bad


That's when my throat catches.  You know, in that way where it triggers your face to cool and then the tears come and you can't breath because your throat is still caught and the words won't come out. Because I know that the next line is

The only way you can know is give it all you have  


And then, I was a mess.  As I'm driving home, way past my bedtime, emotional, crying and a snotty mess.  Because, I miss my Mom. Because she gave all that she had.

My Mom did do it all.  She came to the US not knowing how to speak English and learned my watching TV.  She put herself through beauty school and opened her own salon years prior to have me and my brother. She earned her GED and went to college to become an XRay tech.  She hustled, she made my life better by bettering hers.

And she lived life

She surfed in Hawaii


She zip-lined over the desert


She floated down a river


And so, so much more.  She gave zero f*@%s what you thought about any of it.  She was going to do what she was going to do and enjoy it, thankyouverymuch!

And she loved her family fiercely.

So, when, on July 2, 2015, we were tasked with finding a photo that best illustrated her, as much as my brother, Dad and myself like this photo.  We couldn't use it for her obituary.


 
This was the very last photo to be taken of my Mom on June 25, 2015.  She's surrounded by my family and my brother's family.  We are in Florida enjoying a vacation that she planned, that she literally lived out her last days for.  That woman in the center, she's not my Mom.  That's not how I want to remember her (though I cherish that photo) and that's not how I wanted our family and her friends to remember her.

This is my Mom



That photo, with that crazy, wild, genuine smile.  That, that's my Mom.  That's the photo my brother and I convinced our Dad should be used.  That's a photo of a woman enjoying life to its fullest.

She was one hell of a woman.  And she knew "How to Live"



Thursday, April 14, 2016

Enjoying Life While Eating An Anti-Inflammatory Diet {sponsored}

I am attending GFAF Expo as a Blogger. I was offered this giveaway for my blog.  All opinions are mine.

Since November of 2015 I've changed the way I consume and enjoy food.  Having adopted an anti-inflammatory diet as a suggested way to help manage my Stage 4 Endometriosis diagnosis, I've scoured the interwebs & library for help in finding appetizing and appealing food options that I can eat.  

It's been a tough road to travel for me.  Had it not been for the vast information I've received and changes I have made over the years as I've recovered from an eating disorder, I'm pretty sure that I would have been in the fetal position crying when the words "anti-inflammatory diet" were uttered in September of 2015.  


I know that food is to be used to nourish and sustain.  But, come on!  

Bread does both of those.  So does red meat, dairy and, well okay, coffee doesn't necessarily do either, but give me a break.  

That attitude right there, that defiance, it lead me on a good month long two-year old like tantrum about changing my food plan, again. I had changed it already, some 12 years prior, to gain mental, spiritual and physical well-being.  

I knew, though, by the end of October that I needed to make changes, again.  I had to shift my mind set from "don't mess with my food", to a more positive outlook of "I want to be healthy, I want to be able to walk, I don't want to be in constant pain".  What did I need to do to achieve that?  Look at the food that I was eating with new eyes as how it was going to nourish and sustain me in the long run.   

My Endometriosis diagnosis was so severe that in addition to the abdominal pain associated with it, it effected my ability to walk, stand and sit due to the inflammation and edometriosis deposits on m
ureteral sacral ligament.

I kind of want to be able to walk, ya know?


I gave up all forms of gluten, dairy, red meat and 
caffeine.  I no longer eat processed foods of any kind.  I do eat whole soy (tofu) sparingly, but the use of soy sauce and soy additives are avoided. 

I'm still looking for ways to become better informed about food choices as I walk this path, though. 
My hope in attending the Gluten Free & Allergen Friendly Expo is to not only surround myself with other like-minded individuals, but to learn about possible food options that may be out there for me to try, to get as much valuable information as possible and to be able to make an informed decision. 


The Gluten Free & Allergen Friendly Expo "is dedicated to meeting the needs of the celiac community, those with gluten and food sensitivities, auto-immune/inflammatory diseases, and autism. The public is helped through vendor expositions, educational sessions, and online resources. The manufacturers are serviced through vendor expositions, marketing programs, and consultative services."

If you are interested in attending the Gluten Free & Allergen Friendly Expo on either May 14 or 15, I have 2 ticket codes to give away at this time.  Here is how this is going to work:

I am giving away 2 (TWO) separate, one day ticket codes to attend the Gluten Free & Allergen Friendly Expo at the Schaumburg Convention Center on EITHER May 14 or 15, 2016.  You will have the opportunity to attend classes, and visit with exhibitors and sponsors of the event to see how they support the gluten free and allergen free lifestyle.  

For your chance to win ONE of TWO, one day passes (you get to choose which day)

          1) Comment below on how attending the conference would help you
          2) Deadline for submissions is THURSDAY, APRIL 21st by 11:59pm
          3) The two separate winners will be selected and notified on FRIDAY, APRIL 22nd

Interested in attending the event?  You can purchase your tickets here.       

Wednesday, March 9, 2016

Endometriosis Myths vs. Facts & Additional Information - Endometriosis Awareness Week 2016

There is so much misinformation out there about Endometriosis.  I wanted to close out Endometriosis Awareness Week this year with a list of Myths vs. Facts to help spread accurate awareness of this disease, and some additional resources that may be helpful.



First, though, I want to thank everyone who took the time to share their endometriosis stories here, with all of you.

I truly believe that we all have a story to tell, and that as long as we are honest, open and willing, what comes from the heart, goes to the heart.  


Secondly, I want to thank all of you who popped on by here over the last seven days to read these stories.  Thank You! *mwah*




MYTH - Having a hysterectomy will cure endometriosis.


FACT -  Having a hysterectomy will treat endometriosis only on the organs that are removed.  If all disease is not removed you will continue to experience symptoms.  Since endometriosis can grow outside of the uterus, the removal of reproductive organs will not remove the endometriosis.  A hysterectomy can, however, be an way to treat many of the more painful symptoms of endometriosis (such as painful and/or heavy menstruation) .
From a medial standpoint, there has never been a biopsy controlled study showing that menopause cures endometriosis.  The same is true with the removal of the ovaries.
If the endometriosis implants are responsible for symptoms such as pain with intercourse, diarrhea, painful bowel movements, painful or frequent urination, than having a hysterectomy performed will not change these symptoms.

MYTH - Endometriosis always leads to infertility


FACT - Though endomertiosis can cause infertility in approximately 35% of women who have it, pregnancy can be achieved with the right treatment and partnership with the right healthcare professionals.


MYTH - Endometriosis can be diagnosed through ultrasound, MRI, CT scans or other diagnostic test.


FACT - Endometriosis can only be diagnosed and staged positively, through surgery.  Either by having a laparoscopy or a laparotomy where biopsies are taken.


MYTH - Hormonal treatments cure endometriosis


FACT - Though some women experience long term relief of symptoms through hormonal treatments like birth control pills, progesterone, and lupron, they do not eliminate endometriosis implants. Though some implants may become smaller, less visible or less hormonaly active with these medical therapies, they do not disappear.  Once medical therapy is stopped, symptoms tend to reappear.

MYTH - Lifestyle changes cure endometriosis


FACT - Though some women experience long term relief of symptoms through dietary, exercise and lifestyle changes, they do not eliminate endometriosis implants.

MYTH - Pregnancy cures endometriosis


FACT - During pregnancy ovulation stops and a woman's body is deprived of estrogen .  This can reduce the symptoms that she may have been experiencing prior to getting pregnant, but it will not cure or eliminate endometriosis.


MYTH - Period pain is normal


FACT - Pain is our body's way of telling us something is wrong, it should not be ignored.  Though many women and girls experience pain each month around menstruation, severe pain that interferes with daily life is not normal and should be brought to a medial professionals attention.

MYTH - Endometriosis is cancerous


FACT - It is not.  The connection between endometriosis and cancer is not fully understood and needs more medical research.


MYTH - Endometriosis is hereditary


FACT -  There is genetic theory being studied worldwide by doctors based in London. There is strong evidence that endometriosis is, in fact, hereditary.  Early studies have shown that women with a family history of endometriosis are more likely to have a daughter who suffers from this disease. This theory is still being studied and no evidence has been published as of yet.

MYTH - Endometriosis is a rare disease


FACT - It is a painful, chronic disease that effects 5.5 million women and girls of child bearing age in North America, and millions more worldwide.  It is the most common gynecological disease.


FACT - Endometriosis is a chronic disease with no cure







What is Endometriosis?
Mayo Clinic 

Here are a list of on-line resources that may be helpful in researching Endometriosis
The Advanced Gynecological Surgery Institute 
Endomestiosis Association
Endometriosis Research Center
Endometriosis.org - Global Forum
Endometriosis Institute
World Endometriosis Research Foundation
Center for Endometriosis Care
World Endometriosis Society

On-line Endometriosis Support
*Many of the organizations listed above have support groups available*
WebMD on-line forum
Daily Strength

Endometriosis Facebook Groups
*There are MANY!  These are the ones that I belong to and find helpful, informational and supportive*
EndoCenter of Chicagoland
Finding Peace with Endo
Powerful Endo Women

Keep an eye on this!
Endo What? Movie

...and, check these out
Peace With Endo
Rewire Life

Really great article that I think is worth checking out
How to know if your period pain is really endometriosis (Elle November 2015)

Books that I have found helpful
*Just my two-cents*
Integrative Women's Health - Victoria Maizes, MD & Tieraona Low Dog, MD
From Pain to Peace With Endo; Lessons Learned on the Road to Healing Endometriosis - Aubree Deimler
Endometriosis For Dummies - Joseph W. Krotec, MD & Sharon Perkins, RN
Menopausal Years: The Wise Woman Way - Susun S. Weed



And, please, remember to surround yourself with supportive people.  If a loved one or close friend doesn't understand what you are going through, open up those lines of communication and explain what you are going through.  A great way to start that conversations is "What do you want to know about my endometriosis?"  They still may not "get it".  And, that's okay.  As long as they are willing to understand, there is hope of being understood.  Stay clear of the naysayers or those who diminish you or your symptoms in any way.  Negativity exists out there, we all know that, and we are all going to experience it.  Don't let someone second guess what you are going through, though.  They are not being supportive.



Information exists out there.  
Education yourself, find the reliable sources and spread them. 

Awareness is key  
Become an advocate  
Tell your story & scatter hope 













Tuesday, March 8, 2016

Michelle's Story - Endometriosis Awareness Week 2016

I am so very excited to share Michelle's story with you today.  Michelle is my cousin (through marriage, and only noting that because there is a worldwide study currently taking place in London on whether endometriosis is hereditary...) and she has been an absolute blessing to me as I walk along through my endometriosis journey. The ability to connect with another person who has gone through what you are going through and who can offer you suggestions and advice and encouragement is like nothing else. Particularly with this disease.  For me, there is the added benefit that she is a medical professional.

I know that she was very nervous about sharing her story, but I know that by doing so she has the ability to touch someone deeply with her words and her experiences.  I truly believe that we all have a story to tell, and that as long as we are honest open and willing, what comes from the heart, goes to the heart.


This is Michelle's Story

How old are you?
I am 32 years old living with stage 4 endometriosis and adenomyosis.

When where you diagnosed with endometriosis? 
I was diagnosed with endometriosis in March 2014-ironically the same month that endometriosis Awareness week occurs. My doctors believe that I likely have had endometriosis for 15+ years.

What lead you to initially seek diagnosis?
I have had very painful periods for as long as I could remember. For years I dealt with horrible pelvic pain and it was always brushed aside as being “normal”. It was not until shortly after we got married that we tried to get pregnant. After a few months of it not happening, I just knew that “something” was wrong. Endometriosis had always been in the back of my head and I actually remember telling people that I knew I had endometriosis but knew that you can’t be diagnosed unless you have a laparoscopic surgery to confirm it.

At my annual gyne exam in 2012, I recall telling my doctor about this. He told me that my pain was normal as long as it lasted for a few days and to give it a couple more months. I went back again complaining of right lower quadrant pain which felt like my right ovary stabbing me and recall at that time asking for an ultrasound. This time I was told that when I got referred to the RE (reproductive endocrinologist) that I would have a ton of ultrasounds. Again I left with no order for an ultrasound.  Fast forward a few months later and I finally got my referral to see the RE. It was when we were in her office and I asked if there was any clear-cut diagnosis that was jumping out at her, and immediately she suspected endometriosis based on my symptoms. An ultrasound revealed a complex cyst and I was sent back to my gynecologist for laparoscopic surgery. My gyne at the time was surprised by her recommendation but obliged anyways.

On the day of surgery, I had asked if he would stage my endometriosis. At this point, I had spent countless hours surfing the Internet, endometriosis blogs, and Dr. Google and I would say that I was probably too informed at this point. My doctor stated that he doesn’t waste his time with that and if they did find endometriosis then it wouldn’t change anything. I remember thinking that was not what I read in the literature.

What procedures have you had done?  Medical interventions?  Lifestyle changes?
 March 2014-diagnostic laparoscopic surgery, hysteroscopy, and tubal ligation as the endometriosis covered my tubes. During this surgery, a general surgeon was pulled in my case to look at the bowels and this doctor said everything looked okay. I later learned that this was NOT the case. Fortunately, my doctor gave me pictures from surgery and this later helped me out a ton!

May 2014-I began having more concerning urinary symptoms and consulted with a urologist. I had suspected I had endometriosis in my bladder right off the bat as I went into this appointment already knowing my stage 4 diagnosis. I was urinating between 30-40 times a day! When I saw this doctor he told me he was 95% confident I had to change something in my diet. After a kidney ultrasound, bladder ultrasound, blood work, and a painful in office procedure called a cystoscopy, he saw that I had a bladder tumor that needed to be taken out. Surgery #2 was booked a few days later and pathology revealed the endometriosis had spread through my bladder.

I returned to my RE after this procedure and was told I needed to have excision surgery for my endo before we continued with any more treatments. I saw 4 different doctors over the course of 3 months before I finally landed in the right hands. I saw 2 gynecologists, a gyne oncologist and finally Dr. Miller who is a specialist in infertility and minimally invasive gynecologic surgery. He is also one of two leading experts in the field of endometriosis in Illinois.

September 2014-I met with Dr. Miller and he wrote up his plan after reviewing my medical history, previous surgical reports and also showing him my surgical pictures. He told me if he was going to treat me, then he was going to have me worked up the right way. I had to see a urologist and colon surgeon and in addition would also need to have a colonoscopy before he did surgery on me. He looked at my surgical pictures and said that the endometriosis covered my colon extensively and it was likely I would need a bowel resection. I started bawling; as all I could think about with my nursing background that I was going to have a colostomy. He also said that I would need to have a partial bladder cystectomy to remove the diseased portion of my bladder.

October 2014-Colonoscopy performed and endometriosis penetrated my bowel causing not one, but two bowel obstructions. Verdict: I needed not one portion of my colon resected, but two and the likelihood of a colostomy was very real.

December 2014-I was booked for surgery after waiting months. It was hard coordinating surgery when 3 surgeons are involved in your case. My consent form read: laparoscopic excision of endometriosis, hysteroscopy, salpingectomy, lysis of adhesions, cystectomy, partial bladder cystectomy, low anterior resection, ileocectomy, possible colostomy and possible open surgery. To say I was a mess is an understatement. I wouldn’t even let my parents come see me before surgery and made them wait in the waiting room. I was in surgery for 8 hours and admitted inpatient for 5 days.

I did not end up needing to have my bladder partly removed due to the location of the endometriosis.  It would have been too tricky since it was close to my ureters and they would have had to relocate them, they felt that it was too risky. I also did not need to have a colostomy as my doctors carefully spent 8+ hours operating on me. I did have 14 inches of my colon removed.  I had what was known as a frozen pelvis. Endometriosis was everywhere and even found a little bit by my liver and diaphragm. I was off of work for 6 long weeks.

August 2015-hysteroscopy and biopsy of my uterus

February 2016- MRI of pelvis and hystersonogram to evaluate for fibroids, endometriosis, and adenomysosis.

I have tried a variety of hormonal methods to help control the endometriosis such as birth control, letrozole, and Lupron Depot, heating pads, hot baths, and painkillers.

There is no cure for endometriosis and there are many side effects and risks to each treatment.

I will be starting another 3 month course of Lupron Depot which will basically shut my ovaries down and put me in a menopausal state to cut of the estrogen which feeds endometriosis.

I have made some diet changes but find it difficult to commit to the diets that are recommended for endometriosis (those include eliminating all processed foods and sugars, dairy, and gluten). Instead I have made attempts to choose healthier foods and live a healthier lifestyle.

What was your life like pre-diagnosis?
 I was on birth control since I was eighteen. I truly believe that being on the pill masked the signs and symptoms of endometriosis. Up until I was in my late twenties, my periods were painful but never prevented or interfered with my life. It wasn’t until then when I started developing debilitating pelvic pain. People often ask what it feels like. To me the best way to describe it is having a hundred open bleeding blisters in my pelvis being wrapped and pulled with barbed wire. What I know now is that a lot of the lower abdominal pain I was experiencing were gastrointestinal and bladder symptoms as well. My periods were always painful but as I got older the pain became worse and worse.  I had bowel and urinary symptoms. Sex was painful. I was exhausted all the time. There were times I couldn’t get out of bed. I passed out on the bathroom floor and crawled back to my bed on multiple occasions. I even brought myself to the ER on an occasion. I eventually left because the wait was too long.  Eventually, the pain was so horrible I found myself counting the days to my next cycle wondering what day of the week it would fall on and how I could arrange my workdays around it. I also found myself canceling plans and scheduling things around that time. Around June 2014 I began experiencing chronic pelvic pain where I was taking Tylenol and Ibuprofen around the clock for approximately 6 months straight. I was also prescribed Tramadol and Norco for the pain as well. Surgery could not come sooner!

What has your life been like post-diagnosis?
Life after having my excision surgery and bowel resection has been much better. I finally have an answer to all the symptoms I had been experiencing. My periods are still painful but I can function like a normal person most days. I no longer have to use FMLA and only take Tylenol and Motrin for pain. The last time I had to take a narcotic was 2 weeks post op.  I often worry with each month that passes when and if my pain will return and when my next surgery will be.  I have become more paranoid about each twinge and symptom after surgery, worrying if something else is wrong or if the disease has spread again. My husband and I have learned the true meaning of “for better or for worse and in sickness and in health”. He has been there for me every step of the way and for him I am grateful.

On a professional level, I have so much more understanding on what pain is and I feel that I can really empathize with my patients. One does not know the true meaning of surgery unless you have a surgical scar on your body.

Did you know about endometriosis prior to your diagnosis? 
Yes. I have a friend who also has endometriosis and we have shared a lot of information with each other. While it is great to have someone to talk to and share with and have someone who just “gets me”, I do not wish this disease on anyone.

 I remember driving to work one day hearing a commercial for an Endometriosis Research Study and to this day I can still recall the words that were spoken to me. “If you are experiencing extreme pain, find out if you could have endometriosis. If you are a women between 18 and 49 and think you may have this condition, contact the Endometriosis Research Study today”.  I also had done a ton of research and was very well educated on the disease. I actually self diagnosed before I was formally diagnosed through surgery. My husband thinks I am crazy because I would spend countless hours doing research and say “I think I have endometriosis” and then when I did have the diagnosis confirmed and did more research, I would say “I think it spread to my bladder and bowel”. Needless to say, I was right.

Share any difficulty you have sharing your story with family/friends? 
I have never been one to over share about myself partly because I did not want people to feel bad for me or treat me differently. I am also an extremely emotional person and it was a very emotional time for me and for this reason I did not open this part of my life to people.

People often react strangely to invisible illnesses, too, particularly those centered around menstruation. They either don't talk about endometriosis or the treatments with you, or they offer well-intentioned but incorrect advice based on what they've heard from others.  This was something I did not want to open myself up to. I felt physical pain and emotional pain. I lost some relationships. I felt frustration, aggravation, a sense of inadequacy, fear, and depression.


Anything you want to share about your medical team/doctors?  
I have the best team of doctors. I am soo fortunate to have found Dr. Miller and Dr. Park. They never once treated me as if the pain was in my head and took the time to thoroughly work me up. Had I let another surgeon operate on me, I would have never known I had 2 bowel obstructions and my outcome could have been worse.  I was told that eventually my bowel could have perforated.  Dr. Park by the way is my colorectal surgeon who often operates with Dr. Miller on complex endometriosis cases.  I literally credit these two doctors for saving my life, eliminating as much of the disease from me as they could and help me live practically pain free.

However, finding these doctors was no walk in the park. It is quite difficult to find a doctor who is an expertise in endometriosis. I scoured the Internet and found two specialists in Illinois. Dr. Charles E. Miller and Dr. Frank Tu. The difficulty I had at the time was that I had an HMO and both of these doctors were considered out of network. So I was advised by my RE of some doctors to consult with in my network.

My first doctor who did my laparoscopic surgery obviously was no expert in endometriosis since he had initially told me that staging is useless and also that there is no treatment. So I moved on.

The next Dr. I met with has actually done many endometriosis surgeries but the second I met him in his office it just went downhill from there. Me being the good patient I am brought along my surgical pictures and asked if he wanted to see them. While typing on his Ipad he proceeded to tell me that he did not need to see them because he knows what endometriosis looks like. Strike One. When I finally insisted he look at them he   said to me “wow your pelvis is a trainwreck”. Double strike. Then he proceeded to type on his Ipad and said “so when would you like to book surgery for?” Strike Three. I did everything I could to get out of his office as fast as I could. I told him I needed to consider all my options and discuss further with my husband. He then proceeded to ask me in a rather rude way why I did not want him to do my surgery. So I left his office and never looked back.

I went back to my RE and asked for another referral for another doctor. She gave me a referral to a gyne oncologist. Gyne oncologists are known for their excellent and meticulous surgical skills. I felt like I was getting somewhere. Getting in to see a gyne oncologist proved to be difficult. I was asked to fax my abnormal pap results and pathology results. Ummm what? No I don’t have cancer, I just need to meet the Doctor to see if he can help me with endometriosis. Luckily I was able to get in quite easily as my RE went to medical school with him and also worked with him during residency together.

So I met with the gyne oncologist and I absolutely loved him. He spent over 2 hours with me that day, reviewing my records, pelvic exam, and he sat down with me for over 45 minutes explaining my options and what he would do and told me to think about things and to call when I was ready. He was also honest and upfront with me telling my case would be moderately difficult and that he really only does about 10 endometriosis cases a year. During my consult with him, I asked him what his thoughts about Dr. Miller was as my research showed that he has a significant amount of experience with endometriosis. He said he is an excellent doctor and that I should see him. I told him that I have been wanting to see him and while Dr. Miller accepts my insurance and is in the hospital system I work for; I am not in his physician-hospital organization (PHO). He has privileges at a different hospital in our health system. So this wonderful doctor wrote in his consult note that I would be best treated out of network by Dr. Miller!  It took some time but the medical director at my work finally approved me to see him out of network. I finally felt like I had some hope.

I want to share this because one of the most frustrating things for women and girls with endometriosis is finding the medical help we need. What we need is a doctor with surgical skills, thorough knowledge of endometriosis, understanding of the various treatments, openness to complementary approaches and compassion.

What is your hope in sharing your story?
My hope in sharing my story is to help educate others and for you to be your own best advocate. Terrible pain that interrupts your life is not normal! Even though the media and society tell us that menstrual pain is "part of being a woman" — it isn't! Any woman or girl who suffers from pelvic pain, painful periods that keeps her from living her life the way she sees fit, infertility, GI or urinary dysfunction associated with their cycle, or painful sexual activity should see a doctor. If the doctor dismisses you, find one who will listen just as I did!

My life has revolved around endometriosis for quite some time, both professionally and personally. It changed the course of my entire being — in some bad ways, and in some really great ways. I would not be where I am now or have met the incredible women and professionals I have the privilege of collaborating with. I'm well (for now), after my long and difficult journey. Still, too many others are not well, and so for them, I fight onward.

Another reason why I chose to share my story is that there is a serious lack of education, funding and physicians that know how to properly treat this disease.  If I can reach just one person by sharing my story, I feel like I have accomplished something.

And with that I will leave you with one of my all time favorite quotes. “Be kind, for everyone you meet is fighting a battle you know nothing about”.





    

International Women's Day - Endometriosis Awareness Week 2016



Today, Tuesday, March 8, 2016 is International Women's Day.


"You can celebrate International Women’s Day by supporting a top-rated charity working to ensure women continue to thrive and make a difference for generations to come. A donation to a highly-rated charity working in this field is a great way to honor the women who started it all and to assist those still carrying out this journey of equality. Keep fighting and keep celebrating!" (Charity Navigator Blog)

Endometriosis Association (Milwaukee, WI) is the only rated endometriosis organization on Charity Navigator, "your guide to intelligent giving." Should you be so inclined to make a charitable contribution today, in honor of International Women's Day, please research your options before giving.

Here is the link to the "rated" endometriosis organizations on Charity Navigator
Here is the link to the "unrated" endometriosis organizations on Charity Navigator


Monday, March 7, 2016

Aubree's Story - Endometriosis Awareness Week 2016

I am very honored to share Aubree's story with all of you today.  Very much so for selfish reasons, too.  I have Aubree's book.  It was passed along to me by my cousin Michelle (whose story you will be able to read tomorrow) because, "you're into that kind of stuff".  
This, this right here is what rings true to me and what I love about Aubree:

"When you feel bad all the time I suppose you get used to it. I didn’t realize how bad I felt until I started to feel better. And feeling better inspired me to feel even better."


It was encouraging to read another person trying non-medical/non-traditional forms of dealing with their endometriosis.  It was through her that I was able to find Audrey Michel and continue to be encouraged on my journey. 

Aubree is an integrative health coach and the founder of Peace With Endo.  You can connect with her via social media here:http://peacewithendo.com



This is Aubree's Story

I suffered with extremely painful periods from the beginning. I complained about them for years to my doctors, but no one paid them much attention.  I was conditioned to believe that the pain was normal.

When I was 17, I went on birth control pills, which I continued to take for the next decade. When I got off of them late in my twenties, the pain with my periods returned with a vengeance causing me to miss days of work each month. I suffered with contractions in my uterus, nausea and diarrhea that left me weak and bedridden.

As time passed the pain caused me to suffer almost every day. I was exhausted, bleeding irregularly, and had awful pain after sex. I started to have consistent pains in my bladder and lower back.

It was a co-worker who initially mentioned endometriosis to me. One of her good friends was struggling with it. I had never heard of it. I had no idea what it was.

I started to research it and spent some time in online support groups. It didn’t take long for me to relate to the stories of these women. I had all the symptoms. After struggling for 17 years with extremely painful periods, how had I not heard of endometriosis?

I approached my gynecologist about it and she agreed that endometriosis was a possibility, but the only way to know for sure would be to have surgery. This didn’t sound very good to me. I had to go under and get cut open for an official diagnosis. Was it worth it?

After pondering this for a few months I eventually decided that I wanted to know if this disease was growing inside of me. I was concerned about the impacts it may be having on my fertility. So, I booked the surgery.

It was confirmed that I did have endometriosis. I was 29 years old.

In my follow-up visit after surgery I was offered two options: get back on birth control pills or get pregnant as soon as possible. My surgeon proceeded to sell me on a fertility study at the hospital that involved a barrage of testing and drugs.

After getting cut open and gassed up, pregnancy really was the last thought on my mind. How was I going to be able to take care of a child when I felt so horribly all the time?

I feel into a deep depression. I was filled with so much negative information about this newly named disease: there is no cure, it’s only going to get worse, you may never get pregnant.

I stressed out about it all. It seemed so hopeless. I spent any time that was not working under the covers of my bed with my heating pad. I was exhausted.

There had to be another way.

As I was researching endometriosis online I came across stories of women who were able to manage pain with dietary changes. These stories gave me hope. With little other options I started on what has been coined the “endo diet”.

As I cut out foods from my diet, I began to recognize the connection between the foods I ate and the pain that I was experiencing. Once I eliminated things like gluten and dairy, my digestive issues improved big time. The daily headaches I was used to stopped.

When you feel bad all the time I suppose you get used to it. I didn’t realize how bad I felt until I started to feel better. And feeling better inspired me to feel even better.

So, I dove head first into the world of health and wellness. I began to understand how my body worked. I became fascinated by the synergy of systems in my body and it’s innate desire to find homeostasis.

I grew up with a definition of health that meant popping a pill to solve every issue. This was re-defined for me as I began to study teachings in Ayurveda, Traditional Chinese Medicine, and functional and integrative medicines.

I learned how important it is to address the health of my digestion in order to improve my immune system, in order to ward off endometriosis. I began to understand why it was important for me to eat a certain way and manage my stress levels.

I began to examine the interplay of whole healing encompassing mind, body and spirit. The pain from endometriosis forced me to take better care of myself. It forged me into a spiritual journey to finding love for myself.

I’ve made so many changes since I was diagnosed in 2011, and I feel so much better. I’ve been able to stop taking all prescription and over the counter pain medication and have experienced what it is like to have mild period pain again, without the aide of birth control pills.

I chronicled much of my journey to healing on my blog at www.peacewithendo.com and in my first book From Pain to Peace With Endo: Lessons Learned on the Road to Healing Endometriosis. 


Hi, I’m Aubree Deimler, an integrative health coach and founder of Peace With Endo I support women with endometriosis manage pain through natural methods: diet, lifestyle and positive thinking. I am deeply passionate about wellness and inspiring other women with endometriosis to reconnect with a life filled with love and positive rhythms. Connect with me further at peacewithendo.com.