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!