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!

Taking my life back

The last 18 months have taken a huge toll on my body and mind not to mention my family!  I am over that!  It is time to make a decision and take my life back or lay down and let this disease roll me over.  Being the fighter I am, I am taking my life back.  It is time to get moving and be happy again.  Yes, I am still going to be dealing with pain.  Yes,  there will be days I still can't get out of bed.  Yes, there will still be misery.  But, I need to take the good days and make the best out of it. 

First thing on the list is to get my house back under control.  I dont know about you but when i am feeling better the last thing I want to do is clean. I want to get out of the house with my kiddos and husband!  But it is time!  Yesterday, was the living room.  Today, is the kitchen!  I am going to make this happen.  Feel free to check in on me and hold me accountable.  Our bedroom and my office are next on the list also! 

I am so happy for the change of my mind and thought process.  I know I am in my good 2 weeks of the month but I am feeling good, for me!  My pain level isn't below a 4 but pushing thru it feels so good.  I just have to make sure that I listen to my body and rest when it needs it.  I am going back to starting my day with a daily affirmation.  If you don't do this, I highly suggest it.  Mine for now is I am using my time wisely and paying attention to what my body needs and says.  It is really important to change this at least monthly. 

Second thing I am working on is getting my business back.  I am a Pampered Chef Consultant and I love working my business.  I love being able to bring people back around the dinner table and spending time together.  Plus the extra bonus is I get to make money having fun!  I highly suggest thru this process finding something you love and have a passion for to focus your time on.  I can work from my couch if I need to but I can also get up and get out of the house.  Whatever your passion is, pursue it.  It's a great way to get our of what I call the couch funk!  Having chronic pain you do need to make sure this activity can pull you off the couch but can also be done while down. 

Another way to take your life back is to surround yourself with positivity.  The phrase you are what you eat is more to me you are what you watch.  Think about the last time you watched a sappy or sad movie, how long did it take to pull you out of that and stop thinking about it?  If you had instead watched something inspirational, what would have been the thoughts that went thru your head for that time frame?  How much positive impact on your life would that have been?  Read an inspirational book.  I love the book Take the Stairs by Rory  Vaden.  Life isn't going to be easy especially living with chronic illnesses but there is an option and it may be hard but the investment will be worth it in end.  These ideas come from my dear friend, life and business coach Michelle Withers, but my favorite one she suggests is make a bucket list and set goals.  If you don't have a bucket list and goals you don't have direction in your life.  You are just floating by every day and have no direction.  Start by making your bucket list, this gives you what you want to do and your end result.  By doing this, you can then set your goals appropriately.   We all need goals, whether it is to walk to the corner of the street and back or it is to make half a million dollars a year. 

With these steps under me and part of my daily life and routine I know I will conquer things that are coming my way.  If you have been reading my blog since the beginning it is my hope that you hear (read) the shift in my tone.  My attitude towards all this is more of a go get it and conquer it attitude.  I am going to take my life back and be in control again!  What steps are you going to take today to do the same?

EndoWoman are taking to the streets!

Steffenie and I are so super excited to let everyone know we will be hosting a walk!!!!  We are joining forces with Cause and Event- Portland.  It will keep costs down for everyone involved plus raise more awareness for Endometriosis because we will be walking with hundreds of other people!!!  The event will be taking place on October 18, 2015 in the Bethany Village area of Portland, Oregon.

There are many ways you and your family can support us!!!  All funds raised will be donated to The Endometriosis Foundation of America.
1. Register to walk and join us in person on the day of the event!!!  https://www.raceit.com/register/groups/jointeam.aspx?event=31580  Make sure you choose team EndoWomen of Oregon

2.  You can walk virtually.  So that means where you are you decide that you are going to walk 5k.  You can do it the day of "with" us or sometime during that week.  Of course we would love to see pictures.  http://causeandeventraceseries.com/virtual-run.html

3. You can donate money to the cause.  We would like to raise $2000 for our cause!!!  https://www.raceit.com/fundraising/fundraise.aspx?event=25465&fundraiser=13130

4.  You can also follow our event on Facebook

One of our Endo Sister's has graciously offered to design, make and give shirts to all EndoWomen that are walking in person!!!  We need to know your size of shirt by the end of August so these shirts can get made!!!

Registration costs are $35 and that includes a participation shirt (separate from the special endo shirt) and participation medal.

We know that some of our medical issues cause us not to be able to walk that far, please still register for the walk as there will be a lot of volunteer opportunities available for the week of the race and the day of!  When someone volunteers more money will be donated to our cause!!!

Also if you would like to participate and you are in another state you can register to walk virtually and then host your own event.  Remember though to follow your state and counties laws on groups of people being together!!!  I always suggest using a school field!!!


If you have any questions, please contact Steffenie or myself.

Happy walking and we can't wait to see you all in October!!!!  Let's make this disease known!!!

Too much to handle

I have been hiding out the last month or two.  If you haven't reached out to me I really haven't reached out to you.  Five weeks ago my husband had ankle reconstructive surgery, he is down, non weight bearing, for at least another week.  I have had more ovarian cysts, thank you my one and only ovary for not functioning right.  I have seen a pain management doctor, chiropractor, my GYN, had an ultrasound, had xrays, a CT scan and being referred to a breast surgeon.   I keep asking myself what the hell have I done to be going thru so much!  I am tired of no one looking at the whole picture, every spot I have pain, numbness, burning, tingling, etc.  It is exhausting every day to try and figure this all out. 

The CT scan of my abdomen has come back that I don't have any visible anything wrong in there.  Which is good news and bad news all in one.  I didn't know which way to hope for the results.  If something was wrong then we would have answers why six months post op I am still in pain.  Then if nothing was wrong then that's great but I have no answers other than what I was told in the very beginning.  "Congrats, your pain will never get below a 3, our goal is to control you pain so it stays that low." 

The xrays of my spine and hips says I have some back problems that can be some what relieved by strengthening my core muscles.  Oh ya that's so easy!  Can you sense my sarcasm?!  I would love to be able to exercise but really, how will that work?  Please tell me, I would love to know and do it!

There comes a point with this disease that you just have to realize this is your life.  I don't know how to become ok with it.  I have no words of wisdom to bestow on you, if you are at this same point your journey.  I always say to myself at night, that tomorrow I am going to get up and take control back of my life.  It lasts for about 2 hours and then I am exhausted and to me the disease takes over and I have to take a nap.  I need to become ok with this and I don't know how to.  I am 33 years old, there is no reason I should have this much exhaustion!  I am 33 years old and there is no way I can even work.  At 33 years old I shouldn't be living in a 70 year olds body.  Some how I will get thru this, I'm not sure yet, but I am TOUGHER THAN ENDOMETROSIS!

Have to dos vs Need to dos

There are so many things in life I want to do.  Some of them are superficial and some of them will make a difference.  Some of the things are have to dos and some of them are want to dos.  There comes a point with this nasty disease when you have to only do the have to dos.  Everything else falls by the wayside and you just keep keeping on. 

I am so blessed that about six months ago a very dear friend of mine challenge me to stop faking it and to be real.  No, I haven't been real this whole time.  Yes there are times you have to suck it up, put on a smile and do it. But that shouldn't be the majority of the time. You need to be honest with yourself.  Every time I am in the midst of a big decision now I look at it and say is it a have to or a want to?  Is it a fake it or is it make it?

I have to put all my decisions thru this thought process still because it hasn't been easy to be true to who I am.  I am such a people pleaser and love helping people out that I lose what I need and how I need the help.  Don't get me wrong it is still far and few between that I ask for help but I have slowed down jumping up to help others.  I only have a handful of spoons that I am given every day, that handful seems to be dwindling lately, I need to use as many of those spoons as I can to help my kiddos.  My youngest crawled up in my lap today and said "Mommy, how is your tummy?  Is it ok?  I want you to come on my field trip today!"  I jumped up and used a handful of my spoons to go but I did.  I need to save my energy for those moments.   Am I going to be stuck on the couch tomorrow because I walked around for 2 hours today, ya of course I am.  But am I ever going to be able to go on another kindergarten field trip again, no I am not!  So did I fake it to get thru the field trip, ya. But was it me being real and being honest with who I am as mommy, yes it was.   And those moments will always be worth sucking it up for. 

I am sorry to those that think any of us with chronic illnesses are faking it.  Or think that if we would just get up and moving or think positive it would all be better, let me tell you we would give anything for that.  I hate having decide dealing with the laundry or doing dishes because I only can do one tonight.  I hate that I am going to have to stop with my business because I can't take up that extra energy to do it.  I hate that....I could go on an on and so could any person who has endometriosis or other chronic diseases.  But to be real to myself I have to make these decisions daily and sometimes minute by minute. 

My hope and prayer is that one day it won't be like this.  That my daughter and other females will not endure what I and so many women have gone thru.  And that one day we will all be able to do what we want.  Until that day I challenge each of you to be real to yourselves and those that don't have to endure this every day to be understanding of we are doing the best we can. 

No, taking a nap won't help!

So often as women with endometriosis we hear complaints about us being tired all the time.  Geez, I wish I could lay around all day.  Maybe if you got up and did something you would have more energy.  You should try drinking some coffee, that always wakes me up.  If you think positive thoughts it will make everything better.  I'm too busy to rest like you do.  So many people, in my opinion, have no clue that this is part of having endo. 

No one knows if it is the imbalance of hormones, or chronic pain that play a part in this fatigue but let me tell you it is very real.  Other reasons this occures may be the constant inflammation in the body, excessive stress or possibly when having chronic pain one sleeps less soundly.  One Internet source describes endo fatigue as a "grinding fatigue as severe as that experienced with advanced cancer is present in most cases." 

Many different sites describe it like this:
     -heaviness of the body, feeling weighed down
     -depression like symptoms, heaviness of the mind and body, mentally overwhelmed
     -simple activities like showering and getting dressed takes effort and planning
     -irritability, short term memory loss and emotional outbursts/breakdowns
      -sleep, coffee, resting, meditation etc don't help
      -loss of joy in favorite activities and hobbies

Believe me when I speak for other women, this isn't what we want to feel like.  It has cost us relationships, isolated us, left us feeling alone and misunderstood and sometimes makes us feel like we don't even know who we are.  I have a horrid fear of tomorrow.  I have no clue what I will wake up feeling like.  Is tomorrow going to be a day I can't get off the couch all day or a day I actually get to vacuum?  I hate not knowing how I can plan for a day from now let alone in three months.  The disease takes away so many things in my life.  I have dealt with it severely for the last 4 years, off and on for 22 years and every single minute for the last year.  It is miserable.  There is nothing fun about it.  There is no for sure treatment.  My best option was the surgery I had 4 months ago, guess what, I still have pain.  I am tired of being tired.  I am tired of the battle inside my body and with the doctors and people around me to understand this disease.  I am tired of telling my kiddos and husband no.  Endo fatigue has stripped me of who I am and who I aspire to be.  Now I am left with just trying to make it thru this day sometimes even just this minute. 

Get the word out there

I have always believed that I go through something to be able to help someone thru a similar situation to make it easier or be a comfort.  Like with Makenzee and her craniosynostosis, I was then linked up with Becka Van Gelder and her son Grayson.   With endometriosis this last year I was blessed to be going thru an eerily similar situation with Steffenie Robinson.  The amazing part that the majority of times one of us is the strong one while the other is having a beyond dark day. 

Since being aware this is the disease I battle and how unaware people are of such a common issue,  I realized that is why I am dealing with the nightmare.  I vow to raise awareness for this disease and I hope this month thru all my posts on Facebook I have educated a handful of people!

My niece and I spoke at a Job's Daughters meeting on Monday night.  We read another blogger's  conversation with endometriosis.  There were adults there that never heard of endo before and those that had family members were affected by it.  Almost every adult in the room came up to me afterwards and said how much they learned and appreciated the information. Most had no idea that the girls they are working with could be dealing with this so young!  It was in that moment that I decided more awareness is needed in education adults who have dealt with this pain for so long but also those adults who are working with our youth for signs to watch out for!  Also spreading the word to these girls that painful periods is not normal.  I will be figuring out how to start doing speaking engagements and pamphlets.  It's all in the idea process right now but that is how amazing things start, right?

Endo Awareness month

Every day this month I have posted something about the clinical side of endo on my Facebook page.  I have posted facts and stats.  I have stayed away from the emotional side of it.  I have stayed away from how it affects my family.  And I have stayed away from talking about the daunting future that this disease has bestowed upon me, and my family.  I'm over that part, it's time to get real about it.

Endo sucks, there's no other way to say it.  No mom should have to lay on the couch and tell her kids no because they simply want to go to the park.  I don't get to tell my kids that we are going to do something fun next weekend because I don't know if I will be able to go do it and this disease has let them down too many times.  I have to plan when I am going to do something that I am down the day before and the day after.  No mom should have to explain the spoon theory to her 11 year old.  No one should have to cancel plans with someone else because they don't feel good.  This disease, just like other invisible diseases and chronic pain,  causes the woman or man that it effects to carry the weight of the world on their shoulders.   I have been blessed by having my children,  yet somehow I need to figure out how to raise them and be present in their life.   Yes I have managed for 12 years by faking it and just pusing through.   I can't do that anymore,  my body is so run down and tired.  There has to be another way.   Ya I may be complaining but it is unfair. 

This disease gets hardly any funding yet cripples and effects more woman than most other diseases.  People aren't researching this as much as they should.  There is hardly any knowledge in the medical community about this disease.  In the last 2 weeks I have seen 2 different doctors, one told me because I had a hysterectomy and the excision surgery I don't have endo anymore.  And the other one was upset that my doctor didn't take out both ovaries because that would make all of this go away. REALLY?!  Don't you think if that was the case I would have done it?    I get when people I meet don't understand the disease but if you are in the medical field there should be somewhat of basic knowledge on it.  No a hysterectomy doesn't cure endo and let's get you to a specialist.  I'm fine with them knowing only that.

This is a disease my family and I will have to live with the rest of my life.  My daughter is showing signs of it already.  It's not fair.  One of my EndoSisters describes this disease as an alien invasion in her body.  It is so true.   A handful of people know about it, some don't believe that it can be that bad, and it attacks like the Atari game Space Invaders. It is so true.   I am sitting here almost 4 months post op with the doctor telling me,  we are hoping not to have you in surgery in the next year.   Really?!  This lat surgery was supposed to buy me at least 5 years.   The hopelessness you encounter with this disease is unreal.   Sometimes you can't even see the rainbow or the light at the end of the tunnel.  
We, as a community, need to raise awareness and funding for research to help our girls.

EndoWomen of Oregon will be participating in a walk in October.  Please feel free to walk with us, walk virtually or contact me to donate.  We would love to have all the support we can.  The money will be going to The Endometriosis Foundation of America. This disease sucks and it takes over our lives.  It needs to be stopped and overcome!

What can you do to spread awareness!

There are so many ways you can help spread the word about endometriosis.  Please pick a few.  I would love to hear what you are going to do!

Events You Can Do
From Your Living Room

1)      Turn Facebook Yellow for Endometriosis : Really simple, for the month of march let’s have facebook turn yellow! Ask all of your family and friends to do it too.  http://www.endochallenge.com/

2)      Participate in Knock Out Endo’s powerful social media campaign by joining their facebook page and share why you pledge to Knock Out Endo… https://www.facebook.com/Knockoutendo

3)      Donate Money to help Endometriosis Patients or Endometriosis Non-profits. There are awesome non-profits who are campaigning this month who would appreciate your support.

Global Events

1)      On March 28th, communities across theglobe will be working in conjunction with Worldwide EndoMarch to participate in awareness events. Check out their website to see what is going on in your community. EndoMarch is organizing two main events this year in Palo Alto California and Washington D.C. To register for these events and get more information at http://www.endomarch.org/  If you plan on attending the D.C. event make sure to go to the social event the night before run by some of the best leaders in the community: http://www.eventbrite.com/e/endosocial-2015-tickets-15783198973

Oregon Events

1)    on March 8th, I will be in Eugene with my fellow supporters to do a flash mob.  It is going to be a great event!  The Oregon Duck will even be there!
https://www.facebook.com/events/391506197674200/  make sure you are wearing yellow!

Thank you for taking a step to spread awareness about this horrible disease!  It affects far too many women and we need to be more aware of it.

What the EndoMarch means to ME!

Anything I can be a part of that gets the word out to at least one more person, I am going g to be there.  I have suffered in silence for 20 years.  I have had family members laugh at me because there was no way I could be in that much pain, it's just a period.  I have had doctors that don't believe me.  I have felt like crap but pushed through it because I had to be exaggerating it, noone else else seems like their insides are being torn out every month.  No other woman deserves to feel like they have a cork screw digging inside them.  I am a mother of a daughter and the Auntie of my nieces.  They don't deserve to go through this.  Through the publicity of this march I hope that we will help gain awareness for this invisible disease.  No you can't see it.  As my friend Steffanie said today, "if this disease were on the outside of our bodies we would look horrific."  You wouldn't be able to ignore it then so why ignore it now. 

I wish I had all the money in the world and could fly to Washington DC to be at this walk in person!  I wish I healed faster from my surgery and could go to Palo Alto to march.   It's just not feasible this year but I WILL be there next year.  And I will be there in spirit, marching right along with these powerful men and women.  Together we will make a difference.   We will step closer to a cure. We will educate people about invisible illnesses. 

Www.endomarch.org

EndoMarch

What: Endomarch 2014 is an endometriosis awareness event that is happening in cities worldwide.

When: March 13th

Who: Dr. Cameran Nezhat and his team have worked hard to organize this movement. They have recruited volunteers from all over the world to help make this happen. On March 13th, professionals, patients and their loved ones will come together to stand united with the desire to improve the quality of life for patients everywhere with endometriosis.

Where: The march will take place in cites all over the world.  You can see what is happening in your city on the Endomarch website. I will be attending the Endomarch virtually.  But there is a big one happening in Washington DC and in Palo Auto,  CA.  There is a full day of events taking place that goes into the evening. The staff has secured hotel discounts for participants traveling and even some airlines have participated in giving participants discounts. All of that information can be found under “files” on their facebook page.

Why: Endometriosis is a disease that effects at least 1 in every ten 10 women, yet it takes on average ten years for women to get diagnosed due to the lack of education and awareness in the medical field and the general population. There is very little in the way of public awareness for the disease. Women with endometriosis often suffer in silence. Women often are left misunderstood and lose their jobs, friends and the support of their family while left in chronic, debilitating pain. Women lose their organs, their pregnancies, and their fertility as well. Endometriosis has a profound impact on the lives of its patients and those near to the patient. The only way we will see improvement in awareness of the disease, money raised to find better diagnostic and treatment for endometriosis is to come together as a community and make some noise. We need to be heard.

How: Register to attend the march today. Contact a march precinct manager to see what is happening near you.

EndoMarch info can be found www.endomarch.org

Where's the EASY button?

The last few weeks have been full of ups and downs.  I have had better days and worse days.  Good mood, crying my eyes out and raging days.  I guess I just had a false sense of how I was going to feel after my surgery.  I had rose colored glasses on and thought "Hey, I am having surgery, the best out there, I am going to finally feel better."  Wow, I couldn't have been further from the truth.  Yes, the endo pain is gone.  Wow that is amazing.  But now everything else is spiraling out of control.  I am pretty sure I was so focused on my endo pain everything else seem minuscule.

Last week I started Pelvic Floor Physical Therapy.  I was told that because I have been in pain so long this is going to be a longer process than just a few appointments.  Go figure, I have been told that through this whole process.  I have so much damage to the whole pelvic region it, the damage affects my abdomen and into my back and buttocks.  At least I feel comfortable with the therapist since it seems we are going to be spending a lot of time together.  Well, all the work that she did made my muscles and ligaments go crazy.  I have basically been down for the last week.  I am working on relaxing my body and trying to release some of the tension that it is holding, since that is what is causing the issue.  At this point I don't know if I am doing it right or not because I just feel cruddy no matter what.

I have been on an estrogen patch now for three weeks.  My Dr. was hoping it would help the hormones from being crazy and out of control.  Ya it helps for about 48 hours after I put the patch on but the other 24-48 hours I am a crazy mess.  I got told today to wait it out more or we can try an anti-depressant to help with all of that.  I hate not knowing which way to go.  I hate not knowing what to do.

My toes go numb.  My legs and arms go numb.  My joints ache.  Yes I have had this for years but I was hoping it was the endo on something or pushing somewhere that was causing this.  Now I have to figure out what that is.  Did you know endo goes hand in hand with SO MANY different diagnosis!  I don't even know where to start or who to see for it.  So I just sit here.

I am 1 in 10.  I feel more like 1 in a million.  This isn't fair to anyone involved.  I have started to go back to just sucking it up to get things done, to see people or be around them.  I run out of "spoons" quickly lately.  I am ran over and exhausted.  Where is the easy button in all this?  I would take the eraser also!!!  I want this wiped out!!!

If you experience painful periods, heavy bleeding or hard cramps even vomiting with your period, that is not normal.  Please don't wait 20 years to have someone believe you, find that person to support you and then find a doctor to help you.  Keep fighting, reach out and find support!  No one else in the world should have to go through this and it's all because I had endometriosis untreated so long!  DON'T WAIT!

Get me off this Rollercoaster

Today is 8 weeks post op.   I really thought I would be better.  This is a roller coaster I want off.  The surgical pain is gone, which is great.  But now I have to deal with the emotional, hormonal side and the energy side of all of this.  I really thought leaving one ovary would save me from this but of course not it's me!  Nothing is simply for me.  I think my body likes to play games with me.  "Let's see what he'll we can put her through!"  I went in for my last post op last week.  I haven't written the update on that because it really took this long to absorb what she had to say.  I at least have less tearful days from the hormones but now it's turned to rage.  My poor husband and kids.  I snap and freak out over "spilled milk" and I am totally not that mom. 

So the dr appt....I went in things are healing well.  Ewww a stich was stuck to scab so she had to yank that out.  If you have never had that done it is the weirdest thing ever!  And my doctor says it's so much fun and she loves doing it.  GROSS, exactly why I am not a doctor.  I went into this appointment to find out a plan.  How are we going to deal with the hormone crap.   It's not fair to anyone involved in my daily life.  My BFF I snap at.  My kids I snap at and of course my husband I want to wring his neck.  And all for no good reason.   Estrogen patch it is.  Hoping that will even things out a bit.  The lump I noticed about a month ago, that ended up being probably a torn ab muscle oh ya now that's lump of scar tissue.  That's fun!  I am still having pain especially on my left "missing" ovary, I'm exhausted and hormonal.  How much longer is this going to take.  Well the random right side pain and the left side pain I'm feelng is spasming tendons and ligaments.   There was so much damage there that that may never go away.  I have to go to pelvic floor therapy in hopes that that will help lower the pain or make it go away.  The dr isn't confident that will help.  So back at square one.  How do I deal with constant pain for the rest of my life!   I can't do that to the kids, or my husband.  oh and top it off "you really need to take it easy for 3 more months, you are still recovering."  Three more months what the hell.  the Dr. Compared my insides to a guy that falls off his motorcycle and gets road rash all over over his body, ya that's what my insides look like. 

Good news is I am up and moving more.  I have figure out how to take which medicine when depending on what activity I am doing.  If I am walking around 30 minutes is about it but if I just stand I can handle and hour or so.  So yes I know, look at the positive I am doing better.
I just feel so overwhelmed by all this.  I have no clue how to plan for what at this point.  I can't plan for an expensive summer vacation because if I still feel like this there is no way I can do that.  I feel like I can't plan beyond 5 mins.  Yes, the endo pain is gone, I am just left with the years of people not believing me and pushing me away of scars and damage internally. 

Spoons!

Sometimes the pain, discomfort, depression and loss of direction over take what I have planned.  I don't know what I am going to be able to accomplish today. I don't know if I can plan something for tomorrow because who even knows what tomorrow will bring.  How do you plan on running your own business in this state?  How do I  plan trips for this summer with my family?  This is a question I have been battling for the last few years but especially right now. Every time I think about it, I think of this story of the spoons.   I wish I knew how many spoons each day was going to be given to me!  It would make life so much easier!  Read this article and you will understand!

The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino
- See more at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/#.dpuf

Being real

A few months ago, a person who has become an amazing support person for me told me I needed to start being real.  I thought, real?!  I couldn't possibly be real on how I was feeling and what I was going through.  Sure my husband knew what was going on and knew what a struggle every day was but he is really the only one that knew and I'm not sure he even knew it all.  So after really thinking about it, I decided she was right, I couldn't go on hiding who I really was and what I was really feeling.  Wow, this is really hard.  I have always had the philosophy to fake it till you make it.  It's not ok!  I was always the one to volunteer first, keep plans no matter how I felt and continue on no matter how I was feeling .  It wasn't fair to me. 

Well now that I have done it for a few months HOLY COW it's hard.  I have cancelled plans because I just can't get moving or didnt want anyone around.  I have told people how I really am feeling, that isn't always taken well.  Sure, there are a select few that understand but most don't.   It is hard to hear what people have to say.  "It's been a month since your surgery, you are young, you should be fine by now."  "If you get up and do things you wouldn't be so depressed."  "I'm so glad this will be the end of it, life on the other side will be so much better."  I am realizing most people don't get it.  There are the select few that get it and are very supportive.  Hold on to those few!

If you are reading this because you have this chronic disease know there are people that will support you.  You aren't alone even though often, you will feel like it.  Seek support.  There are bunches of Facebook groups, if nothing else, with women that are going through what you are.  Don't give up. Last year many amazing women gave up their lives to this disease.  Yes, it gets to be too much to handle.  And it is the worst feeling when no one knows or believes what you are going through.  There are people out there who understand!  I promise.   Be true to yourself!  It is the best gift you can give yourself.  It is hard but you will feel better not hiding behind a mask.

If you know someone who has endo, thank you for reading this because just by reading this you are being supportive to them.  I am sure it is hard to sit by and watch someone you love going through all the pain and roller coaster of life.  I am sure my husband will never admit it but that as a support person to me he has suffered abuse from my emotions!  But know as painful as it is for you to deal with it, we aren't trying to be mean and hurtful and it hurts us also.  If you are looking for a way to be supportive be genuine in asking  what you can do.  Sometimes it is as easy as snuggling in bed.  Be ok with sitting and watching a movie.  Or like I asked my husband a couple weeks ago please just get me out of the house and then 10 minutes later, please take me home.  And lastly don't negate our feelings.  Some days we just can't get up.  Depression, pain and emotions can over take me.  It sucks.  I don't like it anymore than you do watching me but there is times I just can't think positive.  Yes I know getting up and doing things helps my depression, but I can't get up because the pain or nausea from hormones is forcing me to stay down.  It's all a nasty cycle!  It's ok, just love us, take a deep breath and just be supportive.  

No matter who you are, be real to yourself.  It's ok to admit you just can't today.  It's ok!  And hang onto those few that do support you because they are more precious than gold!