Saturday, March 15, 2014

EndoMarch2014: The Aftermath

So, I'm kind of terrified to write this post.  I guess that's my disclaimer.

Going down to DC for the EndoMarch did not have the effect on me that I expected.

On Wednesday, I left my house to drive down to Washington DC by myself (mistake #1).  The drive down wasn't bad, there was decent weather and not too much traffic until I was almost to the city.  Most of the drive, I was thinking about the fact that I wished I wasn't going alone.  I kept trekking on, though.  Tried to think about all of the people that I was going to be meeting once I got down there.

I got to my hotel in DC, showered, and got myself ready to go to Local 16, where a bunch of people were meeting up that night.  I walked to the restaurant and stood outside the door, too scared to go in, wishing I had someone there to help me through this.  I finally walked through the door and was pointed in the right direction.  Anxiety kicked into high drive, and I was brought around the room while being introduced to people.  After standing in the restaurant for a few minutes, just listening to the bustle and conversations around me, it didn't take long for the disconnect to set in.  I didn't feel like I was connected to these women like I thought I would feel.  There was so much discussion of multiple surgeries and daily pain, and that's not my life anymore.  Following the feeling of disconnect was an immense feeling of guilt.  Here are all these women who are suffering every day, and I had one surgery that basically gave me my life back?  How is that fair?  It made me feel like I didn't belong there.  Like I wasn't really one of them because I wasn't suffering the same way.  I did my best to put on a smile and socialize as much as I could.  But I was honestly so thankful when it was time to go back to my hotel for the night.

Thursday morning comes, and it's time to get ready to go to registration and the symposium.  The symposium was very interesting, and it was nice to hear about some research that's being done behind the scenes.  Dr. Camran Nezhat (among the other doctors) was very inspirational to listen to.  After the symposium, we went outside to the National Mall for a ceremony, unfortunately outdoors.  There were videos of interviews, speakers, and a musical performance by Sheryl Crow.  We then walked from where we were back to the auditorium that the symposium was at for the reception.  In all honesty, I stayed at the reception just long enough for it to be socially acceptable, and then I went back to my hotel room and went to sleep, trying not to think about how I was feeling.  While I was so grateful and happy to have spent the day with an incredibly wonderful person that I'm so glad to have finally met, I was filled with so many more unpleasant feelings.

I managed to hold most of these feeling off until the drive home.  It was once I finally got out of the heart of DC that I broke down and started crying.  All I could think about was how stupid I was for thinking that I would be able to handle that event without anyone there with me.  There were multiple times during my drive home where the tears just started rolling down my face.  I just wanted to get home.  It was a heartbreaking couple of days.

I feel terrible for writing about having a bad time while I was down there, but I really think that I needed to let this out.  I don't want anyone that reads this who was down in DC and met me to take any of this personally.  This was all about me, and my feelings of loneliness and abandonment.  It truly was nice to meet a lot of my endosisters, and some of you were incredibly inspirational.  I just know that next year, there's no way I'm going to try to do it alone again.

Wednesday, January 22, 2014

EndoMarch2014: Week 2

What does EndoMarch2014 mean to me?

It means a chance to have a voice.  Not just for myself, but for the women who can't/won't/don't know enough to speak up.  To have a voice for the women who's lives have been taken over by this disease.  For the women who had to wait a decade for a diagnosis.

I got "lucky".  I was diagnosed 5 years after I started suffering, and about 1 year after I started suspecting that endometriosis was the culprit.  I got diagnosed at 21 years old.  I've only had one surgery, and due to excision done by a true endo specialist, I've been almost completely pain free since I healed.  Fatigue is my biggest hurdle since surgery.  But just because I got "lucky" does not mean that this event means any less to me than someone who's been suffering for 20 years.  I still push for awareness, change, and education.

Awareness - Most people don't know what endometriosis is, and have never even heard of it.  When it comes to women's health issues, if it's not cancer, people have never heard of it.  Endometriosis may not be cancer, but that doesn't mean it's not a serious disease.  Endo can completely end your life as you know it, leaving you exhausted, bedridden, and in constant pain.  There are even recorded cases of endo being fatal.  Sounds to me like it's a condition that the world should be aware of.

Change - There needs to be a change in the way most doctors deal with women complaining about pelvic pain.  Saying "that's normal" or "you just have bad cramps" is not okay.  Being told that "it's all in your head" is revolting.  No one deserves to be told that they're imagining this pain.  There needs to be a change in the availability of good medical care.  No woman should have to go into such debt because there's not a single endo specialist covered by their insurance.  The world needs to change and start realizing that these things are serious problems.

Education - I feel so, so strongly about this aspect.  So much of my free time is spent doing research and educating myself about endometriosis.  Even before I was diagnosed, I spent countless hours learning about it.  I feel that my dedication played a huge part in getting diagnosed so quickly once I suspected endo.  I had prepared myself with what to say, and found a specialist to go to without any guidance from my regular OBGYN.  I was not going to be ignored.  I was not going to be put on yet another different kind of birth control.  I was going to leave with a promise of surgery, and faith in a doctor.  All too many women are so trusting of their doctors.  It's scary to live in a world where we can't always trust doctors, but so many doctors are very uneducated about endometriosis.  This leads to many women being uneducated about the medical condition that is wreaking havoc inside their own body.  There are too many women being told that birth control, Lupron, or a hysterectomy will end their suffering.  Birth control does not stop or reduce the growth of endometriosis.  Lupron is a terrifying, menopause-inducing chemotherapy drug with very real, lasting side effects.  A hysterectomy (if endometriosis is truly your only cause of pain) has a decent chance of doing absolutely nothing to relieve you of your pain, since endo resides outside of the uterus.  These are things that we (and doctors) should all be aware of.  Talking about these things isn't using "scare tactics" as I've been accused of, this is reality.

EndoMarch2014 is about coming together.  It's about me and my endosisters uniting as one to bring awareness and attempt reform.  It is so important for us to band together and fight for what's right.  This is an incredible movement to be a part of, and I hope that it's just the beginning of my journey of advocacy.

Monday, January 13, 2014

EndoMarch2014: Week 1

Over the past year, I've witnessed an incredible desire to bring awareness to endometriosis.  This desire should be prevalent, considering this disease is way more common than you may think.

Since I got diagnosed in February of 2013 (we're almost at the 1 year anniversary!), I've been on quite the journey.  I've been in contact with some amazing women who are not only supportive, but incredibly knowledgeable as well.  They don't just have the ability to comfort, they possess the knowledge to know when to tell you that going to the doctor isn't giving in.  This journey has also led me to drift away from some people that I used to be close with.  It's showing me some peoples' true colors.  But, if these people were meant to be in my life, they would still be here.  Endo has shown me who really cares, and who isn't willing to put up with the complications of being friends with someone who has a chronic illness.  A huge positive outcome of this journey is how closely I now know my body.  Endo has made me pay such close attention to my body that I feel so in tune with it.  I know what's causing the physical feelings, and I'm working on learning how to control them to whatever extent I can.

What is EndoMarch2014?  It's a much needed awareness event.  It's a time for sufferers, doctors, nurses, family, friends, and supporters to all come together on one day to being awareness to this illness.  This needs to stop being an unheard of condition, and there needs to stop being a taboo towards talking about a woman's reproductive system.  This needs to stop being a condition that, on average, takes 10 years to diagnose.  Can you imagine, suffering for 10 whole years without even knowing what's wrong with you?  Being told that it's all in your head?  Endo doesn't just cause physical pain from the internal bleeding and scar tissue formation.  It can also cause anxiety, depression, and a wealth of other mental health issues, because one person can only be told their crazy so many times.  It's like you're being punished for being ill, as if you didn't feel as though you were being punished already.

This event is taking place on March 13th, all across the globe.  In the US, we will be meeting in Washington DC.  We are gathering to bring awareness to this disease, to bring awareness to the need of better medical training, to bring awareness to the necessity of more education.  We're gathering to make people aware.

We need to be heard, and I am so proud to be a part of this.