Broken Dreams

As a child most people dream of what they want to be when they grow up.  "I want to be a doctor."  "I want to be a teacher."  "I want to be a mom."  I wanted to be a music teacher, specifically a choir director.  I didn't care if it was a church or school, I just knew this is what I wanted to do.  I love working with kids and making a difference in people's lives is what I wanted!  So fast forward to high school, I picked out the University I wanted to go to, during my junior year.  It was eight hours north of where I grew up and it was a beautiful campus and area.  I was going to be applying to this school during the summer before my senior year.  Unfortunately, the end of my junior year my dad ended up with a massive brain tumor and had developed a seizure disorder from the damage.  Being the daddy's girl I am and the financial strain this had on my family, I decided to stay home and attend the state college near by.  First dream broken.

So off to college I go.  I start studying music education and vocal performance immediately when I get there. I was taking a full load of general education classes and my music classes on top of it.  Most days I was singing about six to eight hours a day.  Come to find out my vocal chords can't handle that much singing, they are too tight and actually bang against each other as I talk and sing.  I ended up developing vocal nodules in my second year of college.  I had to drop my music degree because there would be no way for me to have the nodules and continue singing.  Dream two broken.

I go on to meet my amazing husband and have three beautiful kids.  If you have read my posts prior to this you know that I have suffered with horrifically painful periods since I was 12 years old.   Some how God blessed me with three beautiful kiddos here on earth and two babies that I never held.  I wanted to be a mom my whole life.  I was going to be on of those PTA president, soccer and van-pooling mom's.  I imagined I would be involved as much as I could in my kids lives (until they were too cool for me) and my husband and I would take them on tons of adventures and experiences.  Little did I know that this horrible terror of Endometriosis would be the next thing in my life to crush my dreams.  I have to pay attention to how much I do and when I do them so I can save energy to go do things with  my kids.  There are times I miss out on going places with them or seeing them do something because I am laid up on the couch in more pain than people can imagine.  This is not how I imagined my life.  I hate that I don't get to be the wife that I always wanted to be.  Endometriosis gets in the way of so much of a romantic relationship.  From the pain, the chronic fatigue, the don't touch me feelings to the depression, this isn't what I dreamed being a wife looked like. Dreams three and four broken.

I don't understand why my big dreams in life keep getting broken for one thing or another.  I don't understand what I did or didn't do to deserve it.  But I do know other dreams, that I didn't even know existed are coming true.   I have learned how to say no to people and to doing things for others all the time.  My kids are growing up to be some of the most sympathetic, compassionate and caring people I know.  And I am trying to learn not to feel guilty for not being able to do everything all the time.  Yes, it is still hard to know how many dreams where broken and not know why or how that changed the outcome in my life but it is good to know that I will get through all of this and that my kids and husband will be by my side fighting right along with me!

My 22 year long battle with Endo

When I was eleven years old, I started my period.  I never knew any different.  I had horrible cramps and would double over in pain from it.  My periods would last 5 to 7 days and I would bleed through super pads and super tampons in an hour.  I thought this was normal.  I never knew anything different.  My parents took me to the doctors and they put me on birth control at 14 to control the ovarian cysts, periods and cramps.  I don’t remember if it ever help, but I am pretty sure it never really did much except control the cysts.  There were times that I would crawl across the floor to get the Midol to help relieve some sort of pain.  My mom never believed me it was that bad.  And there were times she would even laugh because she thought I was being so dramatic.  Her periods weren’t that bad so she had no concept of how bad mine were and thought I was exaggerating.  It seems a lot of people have this same story.  If you have never experienced this then you have no concept of how bad this is.  Doctors had no clue what to do and just assumed this is just how my periods were. As the years went on doctors would tell me it isn’t that bad and just to take birth control. I would rather give birth than have these period cramps, that isn’t normal.

              So after years of dealing with this pain, having three babies (yes I am one of the lucky ones), we fast forward to me being 29 years old.  At this point I have been dealing with this for 17 years!!!!  In March of 2011, I was hospitalized for pain.  At the time the doctors told me I had PID.  I was pumped full of antibiotics.  The pain lasted for weeks.  I had not insurance so I was going to Planned Parenthood for them to treat me (aside from being hospitalized).   Looking back I am pretty sure I never had PID, maybe I did, but that was a full blown endometriosis flare.  Finally, when I had my post hospital check up with PP, the nurse practitioner said “Have you ever heard of endometriosis?  I am pretty sure you have it.”  I ran home to look it up, YES THAT’S WHAT THIS IS!!!  Finally, I had some sort of answer for the way I had been feeling all these years.  But guess what?  I had no insurance.  There was nothing PP could do for me except putting me on continuous birth control so I never had a period.  I had to wait three more years to finally have to be able to see a doctor to deal with this.  The pain was horrific, at this point the pain had increased to the point that I was never out of pain, it no longer came in cycles, it was just constant pain!

              In January of 2014, I was lucky enough to walk into a gynecologist office that believed my pain.  I explained my symptoms.  I had horrid constant pain, excruciating pain with intercourse, pain standing, sitting or lying down, pain with anything I did, stabbing pain in my pelvis and ovary.  I was never relieved of pain, nothing I did helped.  She looked at me and said I think you have endometriosis, I want to do surgery.  She explained she would go in and do exploratory surgery and if she found endometriosis she would burn it out.  Ok, sure do surgery make this better.  Little did I know ablation, burning out the endometriosis, was the worst thing we could do. 

              After getting the insurance approvals and on the surgery schedule, late March I finally had my surgery.  I was a basket case the night before.  I had been told my whole life this wasn’t real and this was how it was, what if she found nothing?!!!!  What if it all was in my head?!  Well, that wasn’t true!  I was covered in endometriosis.  She found it on all over my uterus and ovaries and even on my liver and other places. She burned off what she could and closed me up.  She said it was the worst endometriosis she had seen and   Sweet, I have endometriosis and now I am done with this.  Little did I know that wasn’t the case!  Come to find out endometriosis is like a weed.  If you burn it off, it almost spreads like wildfire and implants “seeds” everywhere in your abdomen.

              The pain subsided a little but never went away, sure it went down a little but I was still in pain after the surgery.  I went back into her and she said Lupron is the way to go.  It puts you into menopause and stops the endo from growing, it’s the best bet for endo.  I did it.  I took the shot in June of that year.  The hot flashes started, the hair falling out started, and the pain increased.  Little did I know I would later call this drug the Devil’s drug.  Being on Lupron was hell.  I had no support system that had ever dealt with endometriosis and believed what the doctor told me.  I never looked up Lupron.  It is a chemotherapy drug.  If I had known then what I know now, I wouldn’t get within 100 feet of that shot! 

              So Lupron failed, birth control pills failed, so hysterectomy is all I can do.  Once again no research on my part!!!  What is my problem?  I have learned my lesson now, I research everything and trust no words coming out of doctor’s mouths!!!!!  Well the nice part is I finally got hooked up with some endo support groups.  Low and behold there is a doctor here in Oregon who knows more about endo then my normal gynecologist so I switched doctors.  The new doctor agreed that I needed a hysterectomy because she was pretty sure I had adenomyosis also!  We scheduled that surgery for December of 2014.  The emotions of the ups and downs of this year was horrible.  Between the pain, failing treatments and now having a hysterectomy presented to me,  it was horrible.  Sure I was done having kids but for someone to take that option away from me, I wasn’t ready for it!  But I went through with the surgery.  

The doctor scheduled the surgery for 2 hours, I had just had the endo cleaned out, there shouldn’t be too much so it was basically a little clean-up and a hysterectomy.  Boy were we wrong!!!  I was in surgery for four hours.  I was totally covered in endometriosis.  I had it on my bladder, which got reconstructed, my ovary was attached to my colon, my left ovary was totally encased in endo, it was on my diaphragm, ligaments, tendons, nerves, cul de sac, to name a few.  It was everywhere.  Those were the big areas.  She excised (cut out) what she could but some areas were so delicate that she had to ablate them.  Dammit, ablation again.  I was diagnosed with Stage IV endometriosis, adenomyosis and fibroids in and on my uterus. 

Recovery was hell.  It was the longest recovery ever.  I kept reminding myself I had basically three surgeries all in one, bladder reconstruction, hysterectomy and excision of endo.  After three months of recovery I realized that I was healed and this pain wasn’t going away.  I told the doctor I am pretty sure my body hates me and that I was still in pain.  She told me I would be lucky if my pain ever went below a three on the pain scale in my life.  Woah that is not what I was expecting.  I went into that surgery with the expectation that this was going to be it.  Excision is the way to go.  It is the best chance of relief of endometriosis.  We took out the uterus which was so much pain from the adeno and the fibroids, I should be fine now, at the very least it should have bought me a few pain free years.  The emotions that happened for months after that were a roller coaster.  I thank God every day for my kids and husband because if it weren’t for them I wouldn’t be here writing this.  The depression and desperation were deep.  I went through all the steps of grieving.  I was grieving the loss of a life that I thought I would have.  The loss of the idea of the mom I wanted to be.  The loss of the idea of the wife I wanted to be and of course the person I wanted to be. 

Since that last surgery I have been to countless number of doctors, I experience numbness and tingling in my extremities, uterus pain, pain with sex, pain with bowels and urinating, pain sneezing, hot flashes, crazy all over the place emotions, so much more!!!!  I have been diagnosed with fibromyalgia, probably thanks to Lupron.  I have been to more doctor appointments than I ever have in my life.  I have seen more specialists than I care to admit.  And I have more specialty appointments coming up in the next few months.  I have had to quit even working from home, I couldn’t handle that.  I cancel plans and stay at home a lot.  If you know me, you know that isn’t me, I like to be anywhere but home, I like to go go go.  I can’t!  I have had to accept snuggling my kids is better than taking them places.  I have learned to decide that today’s activities are worth doing and scheduling in time to recover or decide today’s activities aren’t worth the recovery and cancel it.  I have learned to live by the spoon theory. (If you haven’t read it, google it, it is worth it!)  I have learned that I am teaching my kids to be sympathetic, self-sufficient, compassionate, empathetic, flexible, and patient.  Most kids will never get these lessons, heck most adults don’t understand these things, but my kids are professional at it! 

The journey continues and will be full of ups and downs.  It will be emotional and painful.  It will be full of questions and hopefully some answers.  Until we can get a cure for this we will have to raise awareness and hope that doctors become more empathetic about our pain.  We are not drug seekers, exaggerators or crazy in our head.  This is real.  This is our daily life.  It is our daily life.  There are people out there that understand.   Find a support group of people to surround yourself with.  Other people that are going through this is invaluable, their knowledge and experience is something you can’t find with your best friend.  Yes a supportive family and friends are great but there is nothing like some that says I know what you are feeling. 

Endometriosis has robbed me of the life I thought I would have.  But I refuse to let it rob my daughters of lives, if heaven forbid they end up with this horrid disease also.  This is why we need awareness and research.  This disease affects more women then breast cancer does, 10% of women are affected by this disease.  Someone said if you know 10 women you know endometriosis.

A Time to Grieve

There comes a time in the process of chronic illness that you have to grieve.  I am pretty sure that is what this last year has been and then the anniversary date of my hysterectomy and major excision surgery brought up all those feelings again.  After my surgery and lack of relief from it, I realized I am going to be dealing with these symptoms forever.  I knew it was a possibility but in my Pollyanna world I didn't want to believe that would be how it was.  I was going to heal from that surgery, the excision was going to be amazing and I was going to have at least 5 great years.  I wasn't so blinded to think that I was never going to have issues again but I was excited for the 5 years.  Well, reality sunk in, I didn't get 5 months.  Here I sit one year later in the fetal position with my heating pad in severe pain all over again.  It's a good thing I have kids and an amazing husband that pulls me through all this crap.

I went to the neurologist today after having ran a few different tests, guess what, they all came back normal.  So guess what they blame all my symptoms on endometriosis, fibromyalgia and stress.  She told me I need to reduce stress and get the other two under control.  HAHAHA does she not understand that.  Oh and she told me that I know where to find her if I need to see her again.  Another write off from another doctor.

So I sat down today and had another good cry.  If a friend ever made me cry as much as this chronic disease does I would totally kick them to the curb.  It isn't fair how endometriosis takes over my entire body and causes so many different issues and no doctor will help you out.  If I wanted to see a specialist I would have to fly to another state to even get treatment.  It isn't fair how this disease robs you of being the mom you dreamed of being to the children that you were so blessed to have.  It isn't fair how this disease climbs into bed between my husband and I.  It isn't fair how doctors write you off because there is nothing else they can see in the tests they are running.  If anyone else treated me like this they would be so gone, I wouldn't even think twice about it.  Unfortunately this isn't someone on the outside, this is a nasty, chronic, benign, attacking, eating disease that is taking over my insides and my life.  I don't get to have a surgery to remove it all, can you go outside and get rid of all the dandelions in your yard and never have another one grow.  I don't even get to take a pill or a hundred to make it go away.  There is nothing to do but live with this.  

I try my damnedest to not let this win.  I am taking control of my life to the best of my ability.  I have started a different diet that helps reduce inflammation (no I didn't give up snickers!!!), heal my gut and reduce the amount of crap food that goes in my mouth.  I have started religious use of my essential oils.  I have upped my vitamins that I am taking!  Exercise is next on my list.  I have started using CBD .  And I have started working on a new passion in life.  I am doing what I can but it still doesn't fix any of this, I am just hoping I can create a better version of what this looks like.


I have to remember being sad and upset about this disease is ok.  I had big dreams of what my life would look like, yoga pants, sweatshirts, ponytails and heating pads were not part of it!!!  I need to recreate a new dream and new ambitions.  I have to remember my struggles and pain does not define me my strength and hope does.  It will take time as I bury my original mental dream board but it will happen somehow.  I will continue to fight and advocate for those around me.  I just keep praying my daughters and other daughters never have to go through this living hell.

Being Healed

I don't know about you but I believe in God and Jesus Christ.  I believe some of the stories in the Bible are true and I believe others were true in their time and open for interpretation in this day and age.  But that is not what this is about at all!!!

In the Bible there are many stories of just touching Jesus to be healed.  There are many stories that Jesus actually blessed the people and they were healed.  A few months ago my pastor did a sermon series on the healing that happened in the Bible.  I couldn't help but sit there and be jealous.  As I sit here every day suffering in pain for a multitude of aliments, I would give anything for Jesus to walk down the street and just brush me with his cloak.  In Mark 5:28, Mark tells the story of the bleeding woman.  At this point, we all assume she was menstruating.  She had been bleeding for 12 years.  It talks about how she had suffered a great deal in dealing with doctors.  THIS IS ME!!!  Ok I didn't bleed for 12 years straight but holy cow could any story in the Bible reflect my life more totally.  This unnamed woman basically snuck up on Jesus and touched his cloak and stopped bleeding and felt her body freed from suffering.  I can only think she must have had fibroids, adenomyosis, or endometriosis.  Something was not right with her body and the doctors couldn't figure it out.  Gotta love that invisible diseases stumped doctors hundreds of years ago also

Where is my modern day Jesus moment?  What I wouldn't give to be able to go somewhere, touch something and feel better!!!  This unfortunately isn't the reality when dealing with this stupid disease.  There is no miracle cure.  There is nothing that will heal any of this, it is dealing with it every day and trying to make the best out of each day.

I had told my pastors wife about this jealousy I felt about these passages.  She told me she had never even thought of it like that and what a powerful image that displays.  Yesterday when I saw her, she said I wish I could just touch you and you would be healed.  What an amazing thought, I wish that would work!!!!  As we were talking about all that is going on she also said to me I bet that you can't wait to get to heaven then, you will just be free of all this pain and suffering.  WOW, YES!!!  I am not ready to go tomorrow but I can't wait for the day that I get to have a "body" healed from all of this pain and discomfort.  But for now I just sit here and pray for some relief and some direction in this huge tangled web.

From the mouth of my BABE!

Here is my husband's take on all this endometriosis crap!!!

Endometriosis has changed my life in so many ways.  It has changed our family life too.  To be completely honest, although this disease is horrible, I always try to find the upside.  End has made me see and realize how much I love and care about my wife.  I already knew I loved her more than anything but it is so much more than that now.  This disease has dragged her down but it has made her fight even harder.  She has had to rely on me even more in turn making me a better man, husband and father.  Endo is really some messed up shit.  As easy as it would be to give up, she hasn’t.  She doesn’t let endo define who she is. 

                As the husband, it has never been a thought of mine to give up on her and walk away.  I hear about men walking away from their wives in similar situations and it makes me sad and upset…ok really angry too.  In a time where love and support are needed, the most, he walks away.  You “boy” are not a man.  I get it it’s not easy by any means but nothing about life is easy…except one thing, loving my wife and kids. 

As crazy as it sounds, endo has made me see even more how amazing my wife it.  Don’t get me wrong, I hate endo and truly wish it never happened to my wife but we don’t have that option.  The only option is to deal with it and know this is going to be a part of our lives forever.  Knowing this, the good days are great days and the bad days are rough but no matter what the day is it’s still our day as a family.  It’s up to us as a husband and wife and family to make it what it is.  This has not only made me better but it has made our kids better.  They are some of the most loving, caring, sweet, awesome kids you will ever have the pleasure of knowing. 

I can’t control what this evil disease does to my wife but I can control how we as a family deal with it.  I know I get my strength from her.  She is a fighter.  As a team we tackle this fight together.  We will never give in and strive to make the best out of whatever this disease tries to takes from or throws at us. 

To any other husband out there, that is going through this and may be lost.  Stop and realize that SHE is the one that has to deal with it physically and mentally every second of every day.  Be there to support her.  Don’t pretend like it doesn’t exist.  LISTEN to how she is feeling.  Take the time to educate yourself.  Remember she has endo, she is not endo.  Take the good days and enjoy, then take the bad days for days of extra love and support.  Remember why you married her…that hasn’t changed.  For better or worse, through sickness and health, it means something!

Elizabeth, you are my wife and the love of my life.  No ENDO is going to change that!

My Prayer Every Day

As I sit here writing today I am at 1,495 views on this blog.  I am so shocked.  When Steffenie first suggested that I do this last November I thought she was crazy.  No way was this gal going to get views on something she writes and especially when I am JUST writing my feelings.  Well lo and behold, she was write.  This blog has been viewed in multiple countries and just shy of FIFTEEN HUNDRED TIMES!  That is amazing.

Every time I sit to write a blog, it is my prayer that this will reach someone that needs to hear it, whether that person is suffering like I am or is in a relationship of any kind with a person that is going through this also.  I am doing all of this to raise awareness for Endometriosis, all disorders that go hand in hand with it and for chronic pain and illness sufferers also.

I am involved in many ways besides just the blog in the hopes of shedding light on a disease that isn't talked about and very much shunned in the medical community.  Steffenie Robinson has been so gracious to allow me to join forces with her, in raising awareness in mainly Oregon but everywhere we can!!!

This year (yes I call a year the same as the schools) my focus is getting a program called EMPOWR off the ground here in Oregon.  It is a program that the Endometriosis Foundation of America has created.  We are looking for mainly high schools to allow a virtual presentation of a program designed to educate and empower our youth to have a voice in their health care and to also know the warning signs that something in their body isn't right.  If you are a teacher, school nurse or have a group that would be interested let me know.  We can do the program anywhere that has internet capabilities.

Another project I am working on is joining forces with Cause and Event.  This is a walk that they do annually.  Any non profit organization can join with them on their 5k walk.  So EndoWomen of Oregon has joined in with them in effort to raise money for research at the Endometriosis Foundation of America.  We have a handful of walkers right now that are registered.  If you would like to find out more info you can check it all out here.  We are looking for walkers locally and virtually.  Also we are accepting donations to be sent to EFA.  Our goal is to raise $2000 for the EFA and we are on way to that goal!

These are just a few ways I am working to raise awareness for the disease that has twisted and turned my life upside down.  How can you help?  What can you do to make a difference?

I am not the mom, I want to be

I am not the mom who sits on the floor and plays Barbies with them. I am not the mom who builds Lego castles.  I am not the mom who sits and plays board games.  I am not the mom who goes on every field trip with them.  I am not the mom who volunteers in the classroom.  I am not the mom who gets dressed to take them to school or to pick them up.  Yes I live three blocks from the school and I drive nearly every time!  I am not the mom who takes my kids to the park.  I am not the mom who has my kids in a million activities. I am not the mom who has a clean kitchen every night.  I am not the mom who makes dinner every night,  sometimes take out is my best friend.

I am the mom that wears my hair thrown up in a pony tail.  I am the mom who shows up any where wearing yoga pants.  I will show up to school wearing no make up and looking like I just rolled out of bed.  I have read all these articles about "those" types of moms.   "You should pull yourself together!"  "You should care what you look like."  Really?  Do you understand if I take a shower, some days that means I have to take a two hour nap afterwards?  If I make myself "presentable" now I don't get to play with my kids when they get home?  So it's a daily choice for me of which battle to fight. 

I am not the mom I set out to be 12 years ago.  I have failed miserably.  I don't get to take them to every event.  I don't have the energy to make dinner every night.  I am the mom who let's my kids eat more quesadillas and hot dogs than any person should.  It's all I can do to get by some days.  My house is a mess.  My kids have lots of chores and I am a stay at home mom.  It's not what this was supposed to look like.

Luckily, I have an amazing husband who plays chess with our kids.  They have a daddy who plays board games with them.  They have a daddy who coaches the soccer team.  They have a daddy that will wrestle with them.  They have a daddy that picks up where mommy lacks. 

I am a mom with chronic pain.  I am a mom with a list of non curable diseases.  I am a mom who has doctors look at me and say "hmmm, i dont know come back in three months."  I am a mom that lays on the couch or in my bed often.  I am a mom that can't drive sometimes because I had to break down and take narcotics to get through the pain.  I am the mom who sees doctors more often than I have coffee dates.  I am the mom who forgets tons of things because of "chronic pain brain fog."  I am the mom who struggles day in and day out to find the balance of what I need to do versus what my body can handle. 

But I am the mom who has more independent kids because of all of this.  I am the mom who has purely passionate and caring kids.  I am the mom who has three kids that can all at least make quesadillas in the microwave.  I am the mom who has kids that look out for each other.  I am the mom that gets more snuggles than most moms ever do.  I am the mom who truly believes I am raising better kids because of my chronic illness.  I am the mom who loves her children more than they will ever know.  I am the mom that will fight everything for her kids.  But they are the ones saving my life every day.  They are the reason I get up.  They are the reason I keep fighting.  They are MY reason!