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.