Bloggers Unite for EndoMarch: Week 10 - Reflection

It was incredible.  Simply incredible.

The day began with the Educational Symposium at Mellon Auditorium.  It was absolutely beautiful and very elegant.  I loved hearing all the doctors speak and the panel discussion afterward.  One doctor estimated there could be a blood test (or possibly a similar non-invasive test) to detect endometriosis within two to five years!  We heard about how different organizations are doing research for the disease, and it was amazing to actually see the people who are trying to find us a cure!

Dr. Camran Nezhat, celebrity of the day
and one of the main sponsors and founders.

Some of the doctors who spoke.

After the symposium, I headed to the site of the Call to Action ceremony on the National Mall...

It was impressive.

All four Doctors Nezhat spoke, as did other doctors and a few celebrities.  The patient testimonials were very emotional for me.  I cannot believe what some endosisters have been through and how strong they are.  One woman spoke of how she'd had 18 surgeries!  Just... wow.  If I'm not mistaken (which it's possible I am... the cold messed with my brain that day!) she was also the one to have endo on her lungs!  Unbelievable.

Doctors Ceana, Farr and Azadeh Nezhat,
sponsors and founders of the event.

After a performance by Sheryl Crow...

...it was time to march!  And march we did.  Down the mall, across and down the streets and back to Mellon Auditorium.  How incredible it was to be surrounded by so many endosisters and their supporters!

We marched to raise awareness.  We marched to "empower, educate and effect."

Because it's

Because we are powerful women and together we have endless amounts of

With this march we let the world know that we will no longer accept the pain from endometriosis.  We will not tolerate having our disease disregarded and our pain dismissed.  We will no longer keep quiet and will be our own advocates for health.

We will never let go of our

http://www.millionwomenmarch2014.org/

Bloggers Unite for EndoMarch: Week 9 - Last minute blog before the trip!

I absolutely cannot contain my excitement for the EndoMarch!  I've been thinking about it and planning for it for months, and I can't believe I'm leaving for DC tomorrow!  I want to attend the educational symposium the morning before the march and hope to learn a lot from the different doctors who will be speaking.  I hope to meet up with other women from Team NC to potentially march together!  I haven't heard, but I can't help but wonder the total number of people who will be gathered to march both in DC and across the world.  It should be a wonderful sight regardless.

I'm taking my nice camera to attempt to document the day.  I could have signed up to be a volunteer photographer for the event, but I'm nervous to see if any of my photos will turn out (aka... if I'm any good).  I really want to capture the feelings on different women's faces and am hoping to do so without coming off as a creeper.

I am so freakin stoked for everything.  I've been doing odds and ends today to get ready.  I cleaned my car and drug everything out to start packing.  I've got my Fight Like a Girl shirt, yellow socks and the Chucks with yellow shoelaces.  I attempted to decorate a yellow hat, but it turned out horribly, so had to scrap that.  I may make a quick stop tomorrow to try to find a yellow scarf or head wrap or something... it's gonna be cold Thursday!  The forecast is high in the 30s... geez.
 

I painted my nails...

I had some actual endo awareness decals from last year, but apparently they don't age well.  I had to hand paint the ribbon... a little rough, but works just as well :)

I'm being a dork and mapping out where everything is.  Luckily it's all in walking distance of each other, as my hotel is only two blocks from the National Mall.  Parking is four blocks from that and sushi is about three or four blocks from that.  (Yes, sushi is important.  I love trying sushi restaurants wherever I go.)  I'm not sure if I'll have time to do much sightseeing.  It would have to be at night, and as much as I've read that it's a safe area to walk around, everyone I know has got me freakin paranoid from all their warnings.

Anyways, EndoMarch or bust!

http://www.millionwomenmarch2014.org/ 

Bloggers Unite for EndoMarch: Week 8 - Reactions

This week we answer:  Did you tell your friends, family, co-workers that you are going to the march?  What were their reactions? 

Pretty much everyone important in my life knows I have endometriosis.  My parents, my "surrogate family" of four sisters and their parents, my closest friends and even most of my co-workers.   Any of my "friends" on FB who follow my posts know too because I post stuff about it occasionally through the year and a lot during March.

I told everyone I would be attending the EndoMarch when I first learned about it back in December, I think.  Every single response I got was amazingly positive.  Not that I thought any wouldn't be, but you just never know how people are going to react when you tell them you're marching on Washington, DC, haha!  All of my friends said it's awesome and a few even said they were proud of me.

My parents were supportive, but they were and still are very worried that I'll be traveling into the big, bad city all alone.  "You're not taking anyone with you?!"  Thirty-one years old and I'm still their little baby.  Always will be no matter what age, and they will always worry no matter what I'm doing or where I'm going.  I love them for it dearly, but... *sigh*

The most recent person I told about the march was a client at work.  I've known her for many years, and she is super sweet.  We were talking about a work event that I said I would be missing because I would be on vacation.  She asked where I would be going, and I told her I would be attending the Million Woman March for Endometriosis.  She is retired now, but I believe she used to be a nurse.  She acted like she knew what endo was, and I told her a little info about the march.

She then asked me how I got involved with it.  I told her that I have endometriosis and found myself blushing a little bit.  It was the first time I'd told someone that wasn't a friend or family member, and I guess I was really nervous.  I didn't need to be though, as she was totally awesome about it.  She said she thought it was absolutely wonderful that I was going and then gave me advice about walking around DC by myself, hehe.  Very sweet lady.

As much as I think about endo and do talk about it with friends and family, and also endo awareness and how I'm fine putting stuff all over FB, I was a little surprised at myself when it came time to tell someone else about it.  Maybe because of the social anxiety and the fear of being judged.  Maybe because it was a client at work.  Maybe because to a certain extent there is still the stigma of talking about your period.  Maybe because as much as we talk about it, it can be a very hard journey and one that at times is not always so easy to share.

http://www.millionwomenmarch2014.org/

Bloggers Unite for EndoMarch: Week 7 - Three Weeks Away!

The topic for this week:  The Endomarch is three weeks away….How are you feeling about going? What are you most looking forward to/most nervous about!

The closer this event gets, the more excited I get!  They announced recently that Sheryl Crow will be performing, which is just amazing.  Hopefully having a big name celebrity will draw in more press and lead to more awareness.  I've already seen a few articles online talking about her involvement in the event and some info on endo, so yay!  Plus a free concert!  There's also an actress with endo lined up to be there, so there's some more press.  Pretty sweet.

I'm looking forward to being around my endo sisters.  I get so nervous in big crowds and I'm not sure I'll actually engage with a lot of people, but I am happily anticipating being around people who get it.  People who have been through what I have and know the kind of regular pain I've experienced.  Families who have supported their daughters/sisters/wives/mothers with the disease. 

I'm excited to hear everyone's stories.  I want to hear what the leading professionals in the field have to say.  I hope someone from the doctors office I want to go to for excision surgery will be there speaking.  I'm excited to see footage of the other marches from across the globe.  I'm thankful I have the opportunity to participate in something so big and important.

I won't lie... I'm also pretty stoked for the time off and away.  I'm taking a week of vacation from work, and it's much needed.  Gonna relax for a few days before the trip and am gonna visit a friend on the way back.  Thinking of hitting up an awesome sushi restaurant and a museum or two while I'm in DC also.  It should be full of all around goodness.

 http://www.millionwomenmarch2014.org/

Bloggers Unite for EndoMarch: Week 6 - Why?

This week's assignment is to answer the following question:  Why is it important for the world to recognize endometriosis?

It's been a very long week, I'm not in the best of moods and I feel that all of the previous weekly assignments have answered this question so I'm gonna keep this one short and sweet.

A huge chunk of the population of women across the world are affected by endometriosis.  A lot of them don't know they have it, let alone even what it is.  If endo was as well known as other diseases and conditions, millions upon millions of women could potentially be spared years and years of pain and heartache.  How freakin fantastic would that be?

More money would be put towards research for a cure.  Diagnosis would be sooner in a woman's life and without her being shuffled between numerous doctors.  More doctors might understand the disease and women who have it better.  They wouldn't keep telling them wrong information and that it can't be as bad as they make it out to be.

Let's help make that happen.

http://www.millionwomenmarch2014.org/

Bloggers Unite for EndoMarch: Week 5 - Expand on a Goal

The assignment for this week is:  "Pick one of the goals of the march and write about how it would change the lives of endometriosis patients."

The goals are listed here, and I have chosen the following:  "To improve health screenings for endometriosis among girls and young women in public schools.  We will be reaching out to the Department of Education to help us launch nationwide educational campaigns and health screening in public schools so that school nurses, counselors, and administrators can recognize and screen for endometriosis and other chronic pelvic pain conditions that afflict girls."

I remember when I first started getting my period around the age of twelve.  It effin hurt.  I wasn't allowed to miss school, so I had to endure the pain while trying to pay attention in class and pretend like nothing was wrong.  As I got older, the pain got worse.  I remember being allowed to miss a field trip in high school because it wasn't really an important one.  But it was supposed to be fun, and I hated missing it.  That evening my best friend in the whole world called to see where I had been, and I told her.  Then she asked me, "What's the big deal?  It's only cramps."  It was right then that I knew that the pain I felt during my periods wasn't the same as most other girls felt.

As the years went on, the pain got worse with each period and it got to a point where I literally could barely walk during them.  Forget crossing campus to get to classes in college.  Then when I was working I would try to fight through the pain, but there were numerous days of leaving early or not being able to make it in at all.  Luckily I had a boss who was willing to work with me, but the coworkers weren't always so understanding.  One day I was walking down a hallway, and the pain took over me.  I literally stopped in my tracks and had to kneel down on the floor.  People were all around, and it was terribly embarrassing.

Through all of those years, I knew my pain was greater than a lot of others', but I thought it was my normal.  So did my mother.  Her sister had periods worse than me when she was growing up... vomiting and literally passing out each month.  I can't even imagine.  But knowing that, I was grateful I wasn't as serious and just assumed it ran in my family and was my lot in life as part of being a woman.

Imagine if endometriosis had been something they told students about in sex ed or health class.  With it being as common as one in ten girls and women having it, that seems very reasonable to me.  Imagine if my mother or I had known about it back when I was a teenager.  I would have actually gone to a doctor to inquire about the possibility of me having it.  I could have maybe been diagnosed way the eff back then and been spared over a decade of misery.  I could have possibly had a laparoscopy back then.  What if my organs are now damaged and I'm unable to have children?  What if surgery back then could have avoided that?

What if the millions upon millions of women with endometriosis who never sought help for a disease they didn't know existed actually had back in their early years of menstruation?  What if they could have known their pain was not normal and there was an actual reason for it?

All of this in a roundabout way of saying that early detection can be life altering.  Education of the students and the faculty in schools could lead to an amazing chance of a better life for so many girls afflicted with the disease.  I really hope the EndoMarch us a big step towards that.

Bloggers Unite for EndoMarch: Week 4 - Interview

This week's assignment is to interview someone you know who is attending the EndoMarch, or to have someone you know interview you.  I know some people in the FB world, but not in real life, so I asked one of my co-workers to come up with a few questions for me.  She also has endo and actually had a hysterectomy a few years ago because of it.

1.  What's happening at the march?

Hopefully, a great deal of raising awareness!  People will be gathering across the globe to spread the word.  Specifically in Washington, DC, there will be an actual march around the National Mall.  According to the event information page on the official website, there will be speakers and presentations as well as educational videos and patient testimonials.  Musical performances will be occurring throughout the day and there will be a dinner in the evening.

2.  Why are you going?

I think it's going to be an amazing day and an incredible experience.  Endometriosis can be a lonely disease.  It's misunderstood, and people who don't have it and experience it everyday just can't fully grasp what you're going through.  I hate that anyone has it, but I feel lucky to know a few women who do and can commiserate when there are bad days.  On the day of the march, I'm going to be surrounded by women who understand and supporters who want to raise awareness and find a cure as badly as we do.  It should be pretty inspiring.

3.  Why is it so important to you?

This disease can be debilitating.  I'm lucky to have found a medication that helps with my daily pain, but so many other women's lives are put on hold because they are in excruciating pain every day.  There is so much misinformation about the disease, and still to this day doctors tell women the pain is all in their heads or that it's normal and there is nothing wrong with them, among many other things that disregard and minimize her symptoms and struggles.  This is disgusting and completely unacceptable!!  Oftentimes, by the time a woman is accurately diagnosed, irreversible damage has been done to her body, and sometimes she is unable to conceive.

I don't know the status of my insides in regards to the disease.  I was in pain for years and thought it was normal.  I've wanted more than anything in my life to have children, but I don't know if I'll be able to.  If I do, I'm terrified that if I have a daughter, she will also be afflicted with this terrible disease.  My hope is that if that does come to fruition, that by the time it's discovered, there will be a cure.  For her, for me and for the 176 million other women who currently suffer. 

4.  What do you hope to accomplish at the march?

The goals of the march are to "empower, educate and effect change".  More specifically, according to the website, the founders want government-funded health organizations to spread awareness to the public.  They want to "launch nationwide educational campaigns and health screening in public schools" to help lead towards earlier diagnosis.  They want "to collaborate with our nation’s medical and nursing schools to launch endometriosis educational initiatives so that future physicians, nurses, nurse practitioners, and physician assistants can more readily recognize the symptoms of endometriosis and provide the appropriate care."  They want "to bring the plight of those with endometriosis to the attention of the media and general public."  I am so thankful for the organizers of this event and how they want to inspire change.

5.  What are you doing to prepare for it?

I'm psyching myself up!  Not that that is hard!  I am so excited to be attending but I do have social anxiety and am a little nervous about being around that many people.  I'll be going up there on my own and will not know anyone at all.  It's a busy place, and I imagine it will be a little intimidating.

I've booked a room at a hotel within walking distance to the National Mall so I won't have to battle traffic and parking issues.  It's actually at the oldest and longest running (100 years!) hotel in the city, so it should be pretty cool.  This will be my first time staying at a hotel all by myself!  It sounds weird, but I've always been with family, friends or a significant other before. 

I had a shirt printed up for the event:

I'm pretty stoked to have it to wear the day of the march and to commemorate the event after.  I'll be rocking my Chuck Taylors with yellow shoelaces and yellow socks.  My fingernails will also be yellow.  These all sound silly, but I love to do little things like that.

6.  What do you personally plan to do there all day?

I'm gonna soak it all in!  I want to attend all the presentations and learn as much as I can.  I hope to meet fellow "endo sisters" and make some friends and connections.  I'm going to march and feel the power that such a large group of strong women can produce.  I want to take pictures and document the day.  I can't wait.

Bloggers Unite for EndoMarch: Week 3 - Letter to Representative

Dear Elected Representative,

I'm writing to tell you about a disease myself and 176 million other women worldwide are afflicted with.  It causes daily pain and can cause infertility, dashing the hopes of ever having children for so many women.  It can be debilitating and can greatly decrease the quality of life for those who have it.  It can take up to a decade for many to be properly diagnosed, which in 2014 is astonishing and unacceptable.  So many doctors are misinformed and are telling patients things that are just plain wrong.  

This disease is called endometriosis.  It occurs when tissue similar to the lining of the uterus is found in other places in the body.  It breaks down every month when a woman menstruates but has nowhere to go so it creates adhesions and scar tissue.  It can fuse organs together and and cause irreversible damage if not found in the early stages.  There is no cure, and the best treatment is currently excision surgery.  

On March 13, 2014 a wonderful event will be happening in Washington, DC and dozens of country capitals across the world.  It is called the Million Woman March for Endometriosis and will be a widespread effort to raise awareness for the largely unheard of disease.  The main goals of the march are to educate and also to bring about change.  Introducing early screening in schools and developing less invasive diagnostic testing are two of the hopes for the near future. 

I, myself, believe I've had endometriosis since I was around twelve or so.  I grew up thinking my pain was normal and never sought help until my mid-twenties.  Had I known that that type of pain was not just my lot in life as part of being a woman and that something was actually wrong, I could possibly have been spared over a decade of pain.

I urge you to get involved in any way you can whether it be attending the march or speaking with your fellow elected officials.  The women you represent deserve a cure, and I believe we can all work towards that together.  To learn more about the EndoMarch and how you can make a difference, please visit http://www.millionwomenmarch2014.org/.

Thank you for your time.

Bloggers Unite for EndoMarch: Weeks 1 & 2 - Basic Info and What the March Means to Me Personally

As I briefly mentioned before I will be attending the Million Woman March for Endometriosis in Washington DC in a couple of months.  I'm pretty damned stoked about it!  I just found out about this bloggers uniting thing and thought it would be awesome to participate.  Now, you and I both know that this blog has always been more like a teenage girl's diary than anything else, basically because it's where I come to vent and talk things out.  I thought it would be interesting to actually write about something important, so here we go....!

The EndoMarch is happening in country capitals all over the world on March 13, 2014.  Leading professionals in the endo field have organized this event to raise awareness for the ever-daunting endometriosis.  The hope is to bring much needed attention to this widely unheard of and misunderstood disease which affects so many women.  Everyone can be involved, whether attending in person or in spirit.  Registering is super easy and you can find everything thing you need to know here.

My last post (which you can find here) really ties into what this march means to me.  Since it's got a brief breakdown of my history with the disease, I won't go into it much again right now, but I will echo the feelings behind it...

I wish more than almost anything in this world that I had known what endo was back when I first started menstruating.  I wish I had known that the pain I felt was not normal even though other women in my family experienced the same.  I wish that I had sought help back then and possibly have been spared over a decade of excruciating pain.  I wish that I didn't have to wonder every single day about the status of my insides.  I wish that I knew if I'll ever be able to create a little life one day.

When I first learned of the EndoMarch, a smile spread wide across my face.  I look forward to it with great anticipation and I feel hope.  I am so very thankful that this disease is being taken seriously and that great effort is being put forth to do something about it.  To bring awareness of this "taboo women's period problem" to the masses.  To get women properly diagnosed and treated years earlier than they have been in the past.  To prevent damage that late diagnosis can lead to.  To one day find a cure.

I can only imagine how empowering it will feel to be standing in our country's capital as part of a worldwide event surrounded by so many endo sisters and supporters.  It's gonna be pretty awesome.