Invisible Illness Awareness Week 2015

The picture on the right, on it's own, probably doesn't look so bad. But when you compare it to the way my body normally looks, it's a different story. Endometriosis (and probable adenomyosis) is an invisible illness in so many ways, for me. It went undetected for almost 6 years, which is actually a much shorter time than average, statistically speaking. I had doctor after doctor tell me that it was normal, I just have bad cramps, when I voiced my concerns. So I believed them.

Until one day, I didn't. I started doing research, found out more about my family history, and knew that something wasn't right. I'm not one for people self-diagnosing, but I was right. And I knew it. Thankfully, I connected with a wonderful woman on Facebook who directed me to a legitimate specialist in Massachusetts. I had my consultation with him, and he was also in agreement about my findings and suspicions. We scheduled my laparoscopy (and excision, if endometriosis was found), and things got real. When I came out of surgery, I found out that I was diagnosed with Stage II endometriosis. I also learned that the stages aren't really any reflection of pain level at all. You can have a stage II in excruciating pain like me, and a stage III with a lesser level of pain. Everyone's body handles damage differently. No one who is suffering is weak.

Yes, I had my excision surgery in February of 2013, and yes, it's the only surgery I've had so far for treatment. Yes, I feel significantly better than I did before my surgery. In fact, I got almost 2 completely pain free years out of it, which is incredible for someone who thought they were going to be stuck with it forever. But last night was a very clear depiction of what happens when my 'angry dinosaur' gets upset. My invisible illness is not less real just because you can't see the twisting pains and probable scar tissue inside me, or the fatigue, or the depression, or the horrendous side effects from the birth control I was prescribed to treat the probable adenomyosis (migraines and bipolar level mood swings, sounds like fun, right?).

I believe in advocacy, awareness, and education above all. My illness may be invisible, but I am not. I am ‪#‎endostrong‬.

Who Am I?

Who you are is important.  Where you've been, where you are, where you're going.  All of those things matter.  Every life matters.

I started this blog for myself, so I don't believe that I ever really touched on who I am, other than the fact that I have endo.

My past isn't pretty, and I don't enjoy talking about it.  I feel like people think I'm looking for sympathy or support, when that's not what I want or need.  I just hope to make people see that they're not alone.  My past contains things like bullying, depression, self injury, sexual assault, getting laid off of two different jobs before the age of 24, bad relationships, and a whole lot of growing, learning, and discovering life's truths.

My present consists of a lot of change.  Just under 3 months ago, Justin and I moved to North Carolina.  We weren't running away, we weren't "starting over".  We made the decision to pursue better opportunities in life, and do that together in a new place.  I recently got a promotion that I interviewed for, and am finally moving up the ladder for the first time in my working life.  I'm still working on my binge eating, and I'm working on learning how to love myself.  I love working out, and I'm so incredibly happy to no longer have a goal that involves weight.  There will be no more obsessing over the scale, obsessing over calories, all while pretending that that's normal and/or healthy.  I believe that the choice to become a Beachbody Coach was one of the best things I could have done for myself, because I now have such an incredible team of supporters behind me any time I need them.

My future has parts that I can control, and parts that I can't.  Lately, I'm learning how to differentiate, and I'm going to try to accept and let go of the parts that I can't control.

There's so much learning, if you just open yourself up to the opportunity.  I have already wasted so much time unwilling to learn, but that door never closes.  That's something you can control.

Live with love.  That includes loving yourself.

Time to return..

When I'm feeling lost, I usually end up back here.  I started this blog to chronicle my journey with endometriosis, but that't not really a part of my life anymore.  That's been confusing to some people, because, no, there is not a cure.  But there is a choice.  I chose to have excision surgery, and my pain has almost completely subsided.  Because of that, I chose to not have endo be a big part of my life.  Sure, it's always on the back burner, but it doesn't get to control my life.  It only ever dragged me down, and life has enough challenges on it's own without me letting this be another challenge.  I don't intend for that to be offensive, I promise.

I think it's time for me to start chronicling my fitness journey instead, since that's way more relevant to my current life.

Just over a year ago, a good friend of mine got me to try Shakeology.  I hated it for the first week or so.  It's now 13 months later, and I can't imagine my life without it.  I used to need to take a nap every single day, or else I couldn't make it through the day.  My fatigue was nothing short of crippling.  I was so tired that working out wasn't even an option.  If I didn't have the energy to make it through a normal day, how on earth was I supposed to have the energy to make it through a workout, too?

I'm so thankful that my friend introduced me to a different way of living.  My progress has not been huge, and it has not been fast.  But it has been a hell of a learning experience, and I'm still continuing to learn and make little changes every day.  The biggest changes have been in my heart and in my mind, and the stronger that I make those, the easier it will be for my body to follow.


If you're interested in following my journey on a more personal level, you can find me at facebook.com/coachmissyr

Stories Like Mine

I know this is the first post I've done in a long while.  I don't like writing without inspiration, because that leads to boring posts.

Saturday, March 28th, 2015 was the 2nd Annual EndoMarch.  This past weekend was filled with meetings, reunions, laughs, tears, and lots and lots of stories.  It's the stories that have driven me to write this post.

The vast majority of women who suffer from Endometriosis all have a similar story.  10+ years to get diagnosed, many times being misdiagnosed, numerous surgeries, most of them unhelpful, unnecessary hysterectomies, you name it.  They're horror stories.  They break your heart into pieces and make you cry.  No one should have to have a story like that.  No one deserves it.

But their stories are not at all like mine.

Yes, it took me ~6 years to get diagnosed, and that's far too long.  But I was never misdiagnosed, I never had drugs forced upon me, and I did not let any doctor/surgeon touch me until I found a specialist.  When I let myself acknowledge that was I was feeling was NOT normal, I started researching.  So much researching.  I was blessed enough to have an endosister find me, and let me ask her so many questions, share my fears, concerns, and confusion with her.  She directed me to her excision surgeon, who was in Boston.  I called and set up a consultation, and right then & there, we agreed to proceed with surgery to diagnose and excise, if endo was found.  That's right.  I had my diagnostic lap & excision done in the same procedure.  I have only had one surgery.  I have never been on Lupron.  I have not had any organs removed.  This is not to say that I was never told it was all in my head, or that I just have "bad periods", because I was told all of that.  But that's nothing compared to the medical torture that other women have been put through.

I want there to be more stories like mine.  I wish I could make all future endosisters' stories like mine.  I had access to the information I needed, and I'm thankful that I knew enough to go out and look for it.  Not everyone is that lucky.  I'm unsure how to reach the girls and women who need help before they go under the knife.  I'm unsure how to get through to people, when they're being told incorrect information from their doctors.

Early diagnosis and excision is CRUCIAL when it comes to regaining your best quality of life.  The longer you wait, the more irreversible damage is done.  The longer endometriosis is allowed to ravage your body, the more scar tissue is formed, and even the best of doctors can only do so much at that point.  We need to educate younger, and we need to push that the first person to open you up is a skilled expert, not your regular OBGYN.  Sure, your regular doctor can diagnose endometriosis, but that's all they can do to help you.  Ablation is not helpful, and is not successful, long term.  Only a specialist should be allowed to do procedures on you, or else you're just putting yourself through an unnecessary surgery.

I don't know how I'm going to do it, but I want to make a change.

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.

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.

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.