Feel Good Fridays

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Happy Friday!!!  Another week, come and gone.

My Mum bought me a Quotationary book and I love it!  So, today’s quote is from that book and by John Wesley,

“Do all the good you can, by all the means you can, in all the ways you can, in all the places you can, at all the times you can, to all the people you can, as long as ever you can.”

Why do anything other than good?  Take this, run away with it, and have a wonderful weekend!!!

Also, if you haven’t already, click here to go vote for who you think should win the Grand Prize for our coloring contest!  The winner will have their design featured on a t-shirt, and all sale profits will be donated directly to the Endometriosis Foundation of America!  Voting ends May 31, 2017.

BLOGS I’VE UPDATED THIS WEEK:

Natural Products that I’ve Fallen in Love With – added Orglamix’s chroma lip shift (a natural shimmering gloss).

Yours, Lisa

Endometriosis & The Lungs

One of our Readers, Monique, has a question for our EndoSisters: I have read your article on endo on the lungs. I have been trying to get in contact with anyone that has had (or has heard of) thoracic endo being successfully treated (no further catamenial hemoptysis or lung collapse) by excision surgery using VATS without the use of non-surgical treatment.

If that’s you, please drop a comment below. She’d love to hear from you.

Bloomin' Uterus

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I’ve read bits and pieces here and there that Endometriosis can grow on or inside of your lungs.  An EndoSister had posted in one of the many Facebook support groups that I follow that she has Endo on her lungs, which causes her to cough up a lot of blood.  Others replied that they have it as well, but it leaves them in the hospital with collapsed lungs every month.  Which got my juices flowin’ to find the documented cases of Endometriosis on the lungs, how it was excised (if at all), etc.  Here goes!  This is NOT meant to scare you.  Just educate us all, including myself.

Endometriosis is usually found within the pelvic cavity, but has also been known to be found northward and latching onto the liver and diaphragm.  It has also been found on the membranes surrounding the lungs and heart.  Even rarer, it has…

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How to you manage? Endometriosis fears, doubts, and uncertainty

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So, my last period was severely painful (the worst since my 2016 surgery), but I’m trying to remain positive about it.  I missed a day from work, stayed in bed, and popped NSAIDs.  I suffered through another two days at work, still on NSAIDs.  The rest of my bleeding days were maintained by Ibuprofen.  It may have been stress-related: walk planning; wedding planning.  You know: stressful things were afoot in March and April.

But what do you do when the doubts creep in?  When symptoms begin to rear their ugly heads?  When your back begins to ache.  It hurts to poop again.  Or worse: pee.  When the cramps set in – when they force you to the floor, squeezing your stomach tightly – hugging yourself to death.  When you’re forced to take a day off of work or cancel plans to lie in bed, medicated and useless.  When you dread the start of your next period…mine is supposedly gonna show up sometime next week.

Or when not on your period and those little pains and discomforts visit for a few minutes near your belly button, your hip, your bowel, your back.  Sharp pains that last a few seconds to several minutes, at no fault of your own.

You’re eating well.  You’ve changed your diet and lifestyle.  Your minding your body.  You’re not overdoing things.  You’ve had excision surgeries.  You follow the published studies and read the books.  You surround yourselves with women who know what you’re going through, and have the support of friends and loved ones.

In the meantime, you hoard your sick time and vacation days.  You’re fearful to plan extended trips, long weekends, or days off because you may need those days for a future recovery.  A prisoner to your own body – unable to truly plan things to go out and enjoy – those valuable days off of work or school and money spent on vacations may be needed for surgeries looming in the distance.

Yet…what do you do when those whispers and fears creep up from the depths?  You hear stories of women who have had complete relief after their excision surgeries; yet others (some who have even seen “Endo Specialists”) continue to suffer.  And some EndoSisters have a return of symptoms even weeks after their surgeries.  Others go a few years without needing another.

“Is it my Endometriosis?”

“Is it adhesions?”

“Is it something else?”

“Do I just need to fart?”

“Do I need another surgery already?”

“How many surgeries are in my future?”

and…”Am I just being paranoid?”

Each of these are valid questions that fly through my mind.  Each I try to smoosh down with a “it’s too soon to tell” or “wait until your next period to see how it is”…It could be *anything* – it may not necessarily be Endometriosis.  But it’s the first thought that comes to mind.

Do you feel the same way?  Do these doubts creep in?  What do you do to stay sane?  To not give up and cry?  Or to not be furious at an illness you truly have no control over?

I breathe.  I write things down.  I try to let them go.  There’s nothing I can do about it right now…they are just words.

Yeah, I say that – but the fears and doubts still exist.  They still linger, floating at the back of my consciousness.  I still want to cry from time to time because of this “new me” and my inability to live as carefree, outgoing, and demanding as I used to.

How do you manage?  Drop me (and all of us in the same boat reading this today) a comment below.

Lisa

 

Belated Feel Good Fridays

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Whew! Last Friday was interesting!  Woke up to a huge screw sticking out of my back tire…so had to handle that, which took the tire store all day.  So I had to take a day off of work…Then I had to take the car to my mechanic due to a new squeaking noise…and he tightened a loose belt *all fixed*  Then I received a bill from the IRS for a forgiven credit card balance from 2014…$650 out the window. *groan* Friday was a BEAST of a day!

So, I was a bit preoccupied and totally spaced on the quote! BUT we’re doing it now!!!!!  Better late than never!

Anna White once wrote,

“Maybe it’s not about having a beautiful day, but about finding beautiful moments. Maybe a whole day is just too much to ask. I could choose to believe that in every day, in all things, no matter how dark and ugly, there are shards of beauty if I look for them.”

And it’s true.  My silver lining?  I got to spend a few hours with my husband before he had to go to work: we visited his ailing Aunt, ran a few errands, and enjoyed a home-cooked lunch together.  It was nice, despite the happenings of the day.

Also, if you haven’t already, click here to go vote for who you think should win the Grand Prize for our coloring contest!  The winner will have their design featured on a t-shirt, and all sale profits will be donated directly to the Endometriosis Foundation of America!  Voting ends May 31, 2017.

Blogs I’ve updated this week:

Natural Products that I’ve Fallen in Love With – added Orglamix’s monthly subscription beauty box

I asked my Doc about CA-125

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Many of you EndoSisters may have heard, or are following, the use of the biomarker CA-125 as a possible indicator of the presence of Endometriosis (read more here).  I had my annual pap smear appointment this week and figured I’d ask my doc to see if they’d run blood tests with my usual annual bloodwork.

I went in fully aware and understanding that CA-125 is considered an unreliable test for Endometriosis for many reasons: it could be elevated due to other factors, it may read a false positive, or CA-125 levels may vary naturally throughout our menstrual cycles.

The conversation went pretty much as expected.  My request was ultimately denied, but at my acceptance.  Had I insisted, I’m sure it would have been accommodated.  Reasons given for denial:

  1. CA-125 test results may be false positives;
    1. The levels vary throughout our menstrual cycle;
    2. Even if I only have an ovarian mass that is non-cancerous (which I don’t…), my CA-125 levels may still be elevated, leading to a false positive;
    3. Elevated CA-125 levels may be due to several reasons, not just Endometriosis;
    4. If a false positive were received; a whole slew of tests would have to take place: why is it positive?  Indicative of cancer? Endometriosis? Something else?
  2. I have no family history of ovarian cancer;
    1. If I had, then MAYBE the test would be justified.
  3. Insurance may not cover the cost;
    1. Without proper justification (aka ovarian mass or history of cancer), insurance would likely deny payment…and it’s over a $500 blood test.

Given the fact that the many studies of CA-125 and Endometriosis tend to express that CA-125 is not (yet) an accurate indicator of the presence or recurrence of Endometriosis, I’m okay with not testing my CA-125 levels.

I was nervous asking because I knew of the general opinion associated with the tests for Endometriosis.  BUT, I asked anyway.  I also don’t feel like my doctor judged me for asking.  And now I don’t have to wonder…

But I know there are gals out there who DO test their CA-125 levels and I must ask: how’s that working out for you? What has been your experience? Did you have to convince your doctor? Does your insurance cover it?  Share in our comments below!

(This is PURELY my opinion.  Please feel free to express yours, and always feel free to counter what I say.  I’m just a gal with Endo.)

~Lisa

 

 

2017 Walk Recap!

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On March 25, 2017, we had our Endometriosis Awareness Walk here in San Diego, California.  It was a beautiful day, the weather was perfect, and the ocean was glorious!  We walked the shores of Shelter Island.

All in all, we had 77 registered walkers (oh how we’ve grown in three years!), plus a few non-walkers there to show support to their loved ones.  We raised $1,857.42 for 2017 and it was all donated to the Endometriosis Foundation of America!  Of that $76.67 was from t-shirt sales, $115.75 was from the San Diego Sisters of Perpetual Indulgence fundraisers, $250 was from the Element Wellness Center fundraiser, and $1,415 was from Gofundme donations!  Also, one of our walkers, Allison, raised an additional $135 for the E.F.A. with her own gofundme fundraiser!  Thank you EVERYONE!

Before the walk began, I wanted to say a few words.  Video courtesy of Richard T. Reyes:

(If you can’t hear passed my sniffles, I’ll type the speech out below):

“Endometriosis is often misunderstood by friends, family, and unfortunately our doctors.

We walk today, together with thousands of women around the world, to show support to one another and spread awareness in our communities.  Raise your hand if you have Endo – look around you.  We are NOT alone in this fight.  Get to know and trust your EndoSisters; support one another.  To the friends and family who walk today, thank you for your patience, your love, your understanding, and your desire to learn with us.  Our journeys are made easier with you by our sides.

We are not weak.  Or crazy.  We are STRONG and relentless Warriors!  We are an army of 176 million!! I am One in Ten.”

To me, these events are not only to raise awareness, but to show and receive support from those who understand exactly what we are going through!  That could be fellow EndoSisters, friends, and family.  And this year roughly half of our attendees had Endometriosis, which meant the other half was their support system! PURELY FANTASTIC!  Photographs have been submitted by various attendees (and used with their permission) and will be posted at the end of this blog entry 🙂

A huge THANK YOU to my husband, James, for providing security; Marie for being our resident medical staff; Timbrely for running check-in; my Mum for all of her help; and to everyone who helped tear down the event.  And thank you for the Endometriosis Foundation of America and the Endometriosis Research Center for providing brochures that we could pass out!

Also, if you attended and haven’t yet had a chance to fill out our anonymous survey, please do so – your responses will help improve future walks.  Click here 🙂

Plans for next year are already underway.  If you’re in the SoCal or San Diego area, save the date:  March 24, 2018.  And, as always, if you’re in the SoCal area, please feel free to join our private Facebook group or attend one of our monthly support group meetings!  We need to be there for each other more than one day a year. ❤

This year we also gave away awareness bracelets.  In order to get one, though, our walkers had to write out their thoughts, opinions, or questions about Endometriosis:

Endometriosis Thoughts, Opinions, and Questions by our Walkers

 

  • Interested in learning more about natural remedies (diet/exercise) to help with infertility.
  • I wish that I knew about this org when I was in treatment back in 2010.
  • How is that German Shepherd doing?  Endo is MOOP.
  • Endo took me from an active 19 year old to a girl who never works out or has the energy to go on outdoor adventures anymore!  I miss the old me!
  • Endo pain is not period pain!  It is debilitating and chronic.  Sometimes, most times, pain meds don’t work!
  • How many women suffer from Endometriosis?
  • Very few people know the affects of Endo.
  • Shocked that I hadn’t heard of it sooner considering how prevalent it is.
  • I have had “Endo attacks” in job interviews, on airplanes, on dates.  It knows no limits, it is ruthless and it can be so isolating.  More research! More funding! ❤
  • What percent of women are affected by Endo?  It’s mind-boggling how little is known about Endo, by the medical community or the general public. 😦
  • Do I have Endo? I need to get checked.  I only have a period every 3-4 months with a lot of pain.
  • Endometriosis isn’t a well-known disease.
  • Heat will be your best friend. 🙂
  • Does food actually help with flare-ups? Or just help not as bad?
  • Endo can attack many different parts of the body, not just the “female parts.”
  • I’m concerned about doctors being able to diagnose without invasive procedures.  Like, why not have an MRI just before a period, when the tissues could be large and visible?
  • Fact: Family support helps those that suffer.
  • I want to do a demo on Endo.  Groups of girls showing every 1 in 10 women have Endo.  Volunteer 100 people at Balboa Park, showing a large circle, 10 people out of 100 break the circle and move into the center showing people how many.
  • I hate seeing my sister in pain – makes me ANGRY!
  • EndoBelly! How to make it go away?
  • I hope they can find a cure for Endo in my lifetime.
  • It’s really hard watching what these girls go through daily.
  • Endo has no cure!
  • What is longest someone has had Endo?  If known.
  • Endo affects 1 in 10 women.  This is not a statistic.  This is an epidemic!
  • I’m walking for my dear friend, Mirna.  She has been through so much.  Thank the Lord God for her wellness. ❤ 🙂
  • It’s so beautiful to see all these WARRIORS! Pain brought us together, but strength will get us through the future. ❤
  • Love to all of my sisters who fight for peace every day!  YOU ARE WORTH IT!
  • Endo affects 176 million women worldwide.
  • Did you know symptoms of Endo can include other diseases like Celiac disease and Anemia?  Skin breakouts?  Crohn’s disease?
  • There is not enough awareness for an illness that affects so many lives.
  • Prayers for all Endo sufferers for a pain free walk/day.
  • Endometriosis.  Fact:  Takes an emotional toll on the spouse also.
  • #endopower

Once again, thank you to everyone who donated attended our walk, and helped!  That day, and every day, is all about support and awareness.  It would be nothing without you.

Love, Lisa

Photographs!

Feel Good Fridays!

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Photo by Richard T. Reyes

It’s FRIDAY!!!

Nearly a week ago, my beloved and I had a “wedding” in the desert. Why in quotes?  Because, we were secretly wed on June 8, 2016; and 99% of our friends and family didn’t know.  We chose April Fool’s Day as our “wedding” date, with a full Dune-inspired ceremony, dinner, dessert, dancing, and camping.  And, of course, to announce our big secret.  It was perfect.  And we’re both still glowing.

Nearly 200 of our closest friends and family attended (some of whom we hadn’t seen in years), which has inspired today’s quote.  Some say Karl Marx once said this…others say it’s a misinterpretation of what he originally said.  Regardless, of who said it or what the original intent was, the message is still beautiful:

“Surround yourself with people who make you happy.  People who make you laugh, who help you when you’re in need.  People who genuinely care.  They are the ones worth keeping in your life.  Everyone else is just passing through.”

And it’s so very true.  Whether those people be friends, family, or friends you consider family ~ hold them close, never take them for granted, and cherish them…

Also, if you haven’t already, click here to go vote for who you think should win the Grand Prize for our coloring contest!  The winner will have their design featured on a t-shirt, and all sale profits will be donated directly to the Endometriosis Foundation of America!  Voting ends May 31, 2017.

Blogs I’ve updated this week:

Blood Biomarkers & Endometriosis – added a 2017 study regarding CA-125 levels and helping diagnose Endometriosis.

Reader’s Choice : Hysterectomies & Myomectomies Spreading Cancer? – added a 2017 report published in the Journal of the Society of Laparoendoscopic Surgeons regarding using specimen bags during  morcellation procedures.

Vote for The Coloring Contest GRAND PRIZE Winner!

That’s right!  You get to choose, my lovely readers!

Over the past several months, we have held a Bloomin’ Uterus Endometriosis Awareness Coloring Contest.  Each month that we received submission, a winner was chosen.  The contest ended March 31, 2017, and now YOU get to choose the Grand Prize Winner!

What the heck does that mean?  That means you vote and I’ll work with Teespring.com to make sure the winning image is screenprinted on a t-shirt, and 100% of the sale profits of those shirts will be donated to the Endometriosis Foundation of America!

So, you ready?  Fill out the voting field below the last picture and submit!  If you dont see the submission form, please email me here.  Voting closes on May 31, 2017.  Please only vote once.  And please don’t vote for a submission simply because someone asks you to – vote for the one you think best deserves to win. ❤

Sept Winner - 2
Submission One
Oct Winner - 2
Submission Two
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Submission Three

Good luck to our three contestants!!!

Feel Good Fridays!

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Well, I’m writing this to you early since I’ll be away on Friday (getting ready for our April 1st wedding!!!!!!!)…so here’s to hoping the “schedule” functions works correctly and this posts Friday morning 🙂

This Friday’s quote is by Australian author, Nikki Rowe, inspired by my great long weekend with my Mom in town; being with family; being amidst nearly 100 EndoSisters, family, friends, and strangers; and a general thought that needs to spread like wildfire:

“I don’t want fleeting friendships or relationships or passion in life, give me fleeting moments in coffee shops and walks by the water but I will never be satisfied with empty kinships that are fleeting & undecided. Those connections are what make us all human and I dare not settle my wild little heart for something of so little depth.”

Have a GLORIOUS weekend!  Spend it with those people that matter most to you.  Rekindle old relationships that may have fallen stagnant.  Evaluate those that may be toxic to your life.  Grasp onto the meaningful and loved friendships.Find your passions and pursue them, overcome with madness and a desire to achieve.  But most importantly?  Find those qualities deep within yourself first…love who you are, or who you can become.

Lisa

Blogs I’ve updated this week:

Endometriosis & the Bowel – added a 2017 study published in the ACG Case Reports Journal of a woman with an endometriosis mass within her intestine, which required excision.

Links – added EndoStore.org to our lists of businesses that donate a share of their sale profits toward helping women with Endometriosis.

Natural Products I’ve Fallen in Love With – added a spot acne treatment by Orglamix.