Feel Good Fridays

Happy Friday! What a crazy week it’s been for me. *whew*

Yesterday, one of our local SoCal EndoSisters wrote this in our private Facebook group.  It was so freakin’ encouraging and uplifting, I asked if I could share here with you today. Obviously, the answer was yes.

“Sometimes, especially when the pain is bad, it is hard for me to remember the things I am thankful for.

I am going to say now, this post is not meant in any way to lessen what we go through, the hardships we manage, but it is one of thanks. Chronic pain, although often debilitating, is not always terminal and doesn’t always mean we are at risk of losing our lives.

Today, I’m thankful that my burden in life is pain and I thank my stars that I don’t have to deal with other chronic issues, where a misstep, or lack of medication, means I could lose my life early. I don’t wish pain on anyone, but I think of those who struggle with healthcare and doctors when their life is on the line, and it makes me thankful I just have to deal with the pain (even though sometimes it makes me feel like I’m dying or makes me wish for it just to end).

I’m thankful I don’t have to worry about conditions that, left unchecked, could mean limb loss (like diabetes), that I don’t have to be confined to a wheelchair as I slowly lose the ability to control my muscles, and even risk not being able to breath on my own down the road. I’m thankful that on good days I can go for a hike, or even just go meet my friends for drinks (even if I am losing the ability to tolerate alcohol without it setting off a flair and I just have water). I’m thankful that I’m not stuck in a hospital bed, confined to a sterile room, even if I’m a frequent flyer. And sometimes I have to remind myself to be thankful when things are bad. Not because others have it worse and I don’t have the right to feel bad, because sometimes it is the only way I can get through what I’m dealing with. It is my coping mechanism. It sometimes is the only way for me to deal with the bad days to get to my wonderful good days, that I don’t take for granted anymore.

This disease can easily crush us mentally, make us lose hope, but on those days where I feel well, or well enough just to do things on my own, I’m thankful. I’m hopeful that someday we will find a solution to our condition, and be given our lives back, or that those much younger than us, will never have to suffer like we do.

And I’m thankful for a community of people like you, even if I’m not often present or involved, and haven’t really met any of you yet. I’m thankful when I see, even through the pain and unfairness, that you all haven’t lost your empathy, your compassion, your supportive natures. It is so great to see people that suffer daily themselves willing to put themselves out there to offer support or love to others dealing with the same thing, strangers we don’t know but are tied to through our shared suffering.

I’m NOT saying that we should ignore what we deal with because “others have it worse”, I’m not saying that at all. What we deal with is real, has huge physical and emotional impacts on our lives, I’m just not ready to give up and roll over and hope I can always find a reason to be thankful, no matter how bad things get. Because what do we have if we don’t have hope? And sometimes that hope is the only thing that can push us past the worst.

I wish you all the best, I wish you strength and pain free days, days where you can still get out and live and appreciate what those days mean. And I wish for all of us that a cure if found and someday we don’t have to worry about young girls finding themselves having to suffer through each day or each period.”  ~Ashlie McCormick

May we all hold onto the hope and strength offered in these words.

Love, Lisa

Blogs I’ve updated this Week:

Dungeons & Dragons & Donuts : added our 3/18/18 session

Our 2018 Endometriosis Awareness & Support Walk

 

2018 group picture
Photo by Exxes Fritz Hauffen

Oh man!  I cannot tell you how wonderfully excited I am after this weekend’s walk!

It was the 4th Annual Bloomin’ Uterus Awareness & Support Walk in San Diego and it was our largest one yet!  Out of 150 registered walkers, 120 people joined us.  It was awesome! Thank you, everyone, who attended!

This year, we raised $1,317.90 for the Endometriosis Foundation of America, totaling $7,065.44 raised since 2014.  A HUGE thank you to everyone who donated or purchased t-shirts!  We were able to once again surpass our fundraising goal!  And due to an incredible donation by my employers, we were able to hand out free Bloomin’ Uterus buttons to everyone!  I’m just flabbergasted!

This is my fourth year hosting our walk.  When I received my diagnosis, there was nothing in San Diego and I needed something.  Absolutely needed it.  Does that need ever diminish?  I must say: nope.  Being able to be around EndoSisters who understand, to be able to hug their friends and family and thank them for their support, and to watch other EndoSisters meet and interact: it’s awesome.  And it really drives home that the need to be around people who get it…around people who aren’t judgmental…is critical to our mental well-being.  Well, mine at least.  And we even met a few people along our route that had Endometriosis and will join us next year!

 

endosisters
All of us EndoSisters; photo courtesy of Timbrely Pearsley

 

 

support
And each of our friends & family who support us <3; photo courtesy of Timbrely Pearsley

 

I’m still floating on Cloud 9.

Prior to the walk, 34 EndoSisters completed a survey about their Endometriosis.  This sign was displayed at our check-in desk; a way of affirming that we truly aren’t alone in our fight.

Percentage Breakdown 24x36 copy

The little pie chart in the center is asking if surgery (whether it be excision, ablation, or hysterectomy) helped with their Endo symptoms and pain.  The responses were:

1 – It’s worse than before

1 – No Endo was removed during surgery

5 – Yes

10 – No

17 – It did for a while

And my favorite part?  We’ve all been told that Endometriosis developing on the spine is “incredibly rare”…yet three, yes THREE, of the 34 women who answered this survey have a confirmed diagnosis of Endometriosis on their spines.  Talk about embracing the fact that you aren’t alone!

If you’d like to see all of the photographs and video shared by our attendees, please click here.

This year, seven of us delivered a speech together.  There’s video out there of the speech (filmed by the wonderful Alyssa Menard):

If you can’t hear passed our sniffles and snorts and giggles and airplanes flying overhead, our words are below.  I wanted to send a loving thank you to those brave women who volunteered to speak with me:

Lisa:  Thank you, everyone, for coming today. I cannot express enough how much it means to me…to each of us.  Can I have all of my EndoSisters join me over here? Many of us were not taken seriously when we would discuss our pain.  It may have been dismissed, we were called fakers or weak, or told that it was all in our heads. We’ve heard “Nothing is wrong” or “Pop an Advil”  or my personal favorite, “Periods aren’t that bad. Suck it up.” Words like this, treatment like this, is demeaning to an already crushed soul. I gave up.  I figured it was normal. And that I was weak, crazy, or just cursed.

Mirna:  Our pain has a name: Endometriosis.  We aren’t crazy, we aren’t weak, and we aren’t faking.  But even with a diagnosis, sometimes our pain still isn’t taken seriously and we are dismissed or judged by the medical community, employers, coworkers, friends, or even family.

Jessica:  We are here today to change that.  1 in 10 women suffer, but here we are walking side by side, a mighty force of Warriors.  Warriors with an ultimatum to Endo: we will overcome!! We will not be beat. And we are not alone.  We may have days where we are forced down, stuck in bed, or in agony as we go about our day…but we will rise again.  And we stand with the help of our Sisters, our family, and our friends.

Kelly:  Endo just doesn’t cause physical pain.  Sometimes we feel like an incomplete woman, robbed of so many dreams.  And some of us can be jealous of those who have children, don’t have to carry a small pharmacy around in their purse, or can live a fulfilling and active life.  But this community that we’ve built together personally helps me cope with the physical and mental downers. Someone, maybe even you, has been there to support me when I needed it.  And here we are today, lifting each other up. This is what we are all about. We are Sisters. We are family. When you go home, please don’t let this energy that you’re feeling die.

Gloria:  Friends and family, please listen when we tell you that we are hurting, or we can’t go do something because of a flare-up; don’t judge or criticize us or think we’re lying.  Continue to offer that compassion and support I know you all have within you.

Meghan:  And to my EndoSisters, stay strong, be there for one another, and don’t be afraid to self-advocate.  Push your physicians to do their research to better understand how best to handle our illness. And if you don’t agree with their opinions or tactics, find another doctor.  There are great ones out there.

Melinda:  One day there will be a better understanding of this illness; of this enemy we all fight together.  But until that day, let us hold our heads high and march on. I am grateful for each of you. We are grateful for you.  Thank you.

**

I am so excited and looking forward to next year.  If you’re interested in joining us for 2019, stay tuned!

And remember, we are all incredibly strong and powerful. And we can stand up to Endo…Together!

If you would like to read about our prior walks, here’s the information:  2017 Endo Walk at Shelter Island, 2016 Endo Walk at Lake Miramar, and 2015  Endo Walk at Lake Miramar.

 

28828538_10160130368455024_6969357097814032619_o
A SUPER EndoSister, Toni. Photo by Exxes Fritz Hauffen

 

Feel Good Fridays

It’s Friday! It’s a beautiful misty Friday.  I just love the rain!

Tomorrow is our 4th Endometriosis Awareness & Support Walk, and I’m so excited.  Women with Endometriosis are often referred to as “EndoWarriors.”  Why?  Because we fight this illness like nobody’s business.  And today’s quote is inspiring:

“Even in times of trauma, we try to maintain a sense of normality until we no longer can. That, my friends, is called surviving. Not healing. We never become whole again … we are survivors. If you are here today… you are a survivor. But those of us who have made it thru hell and are still standing? We bare a different name: warriors.” 
― Lori Goodwin

So, to all my Warriors out there, keep fighting.  And when you can no longer stand, reach out – because we will be there to lift you up and carry you as far as we can.  And when we fall, another will hoist us up.  That is what we do.

Love, Lisa