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