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.