Feel Good Fridays

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Friday!!!!

Today’s quote is for all of you that may be doubting your ability to push through, to finish, or to even start…who feel broken by inability, or frustrated with “the system,” or less-than.

“You can do this, and if you can’t do it today, you’ll do it tomorrow. You are not a failure.” 
― Alisha Rai, Wrong to Need You

You are amazing. And strong.  And you have all of us to help you.

Always.

Love, Lisa

 

Aly Needs Our Help: An Endometriosis Survey

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Yesterday we shared Aly’s story with you.  Today, we’d like to share an Endo project that Aly is working on…and she needs our help!

If you didn’t read Aly’s Endometriosis journey, you can do that here.  Or here’s a quick introduction from Aly regarding her project:

I have been struggling with endometriosis for 7 years now plus 7 other chronic illnesses and I am only 21. I am a graphic design student and for my senior project, I want to create a catalog/brochure that would be available in doctor’s office or clinics to:

  • give patients information about the disease
  • ways to help with the pain and symptoms
  • share stories
  • find support
  • to help bring awareness about endometriosis
  • and a way to let women know they are not alone in the fight.

She has created a survey that she is asking people to take to help her with my research to create a catalog/brochure that people won’t just throw away. She’s also open to suggestions for the content, as well.  If you’d like to participate, here is the link to her survey:  https://apps.facebook.com/my-surveys/endometriosis?from=admin_wall&seed=838

I’ve taken the survey and it took a few minutes and had some valuable questions to answer.

Share Your Story: Aly

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Aly was diagnosed when she was 15 years old.  Now 21, she shares her Journey with us, and she has been through so much.  She does, however, continue to fight and push ahead and raise awareness.  She’s an incredible woman.  And one hell of a Warrior.

Aly’s Journey: I have been a runner since I was four years old. It has always been my passion, but it was also where my pain began. In the spring of my junior year, I was running on the track as usual when I suddenly I fell to my hands and knees in severe pain. I vomited when I tried to get up. It was the beginning of a life-changing injury in which I would endure unbearable stomach pain that I still experience even though it has been 7 years since I was diagnosed.  At first, I tried to brush it off. Each race, I believed that I only needed to work through the pain and simply get to the finish line. I would continue running and then collapse at the finish. Oddly, it never occurred to me to stop running. Injuries are part of an athlete’s life.

At my first doctor’s visit, I was told that that the pain could stem from ovarian cysts that might be rupturing and causing extreme discomfort. I underwent a round of ultrasounds and MRIs, but each time the tests would come back perfect. They couldn’t find anything wrong with me. The doctors treated me with painkillers and, when the season was over, I did well for about a month.  But when I attended a Leadership Conference that summer, I had one of my worst attacks. I collapsed, cried and was once again in excruciating pain.

When I returned home, my gynecologist said I could have endometriosis, a condition where tissue that grows inside your uterus grows outside it. It can make it hard for women to have children. I was sixteen when they told me I probably would not be able to have children. At that age, you are just trying to live and not thinking about the future. I had to grow up fast. The doctor did not want to perform exploratory surgery because I was so young, so they began to treat me for it with birth control medication. Even so, my condition failed to improve, and my doctors began to think there might be a problem with my intestines.

After they ruled out Irritable Bowel Syndrome they began to wonder if my intestines had somehow become twisted. My third doctor, a gastroenterologist, ran more tests, but the results were the same: I was perfect.

At this point it would seem like it was a blessing that nothing was wrong, but it wasn’t.

I had been in inexplicable pain for months and no one was helping me. The gastroenterologist suggested a colonoscopy and said that even if my colon was fine he would still give me a trigger injection into the area where I usually felt the most intense pain. If I was pain free for 6 to 8 hours after, he said, then it was most likely a nerve entrapment. Of course, my colonoscopy was perfect. He gave me the injection and for eight hours I felt relief, but soon the pain returned, heightened to a new extreme.

After three weeks, my fourth doctor, a pain management/anesthesiologist, used an ultrasound and finally discovered the nerve entrapment that was causing the problem. He injected the exact spot, and, after seven long months, I finally felt relief. I had forgotten what a pain-free stomach felt like. However, this only helped for a little while.

About a month later, I was collapsing and in extreme pain again. I went back to my gynecologist and we decided to do a laparoscopy my junior year of high school. When they opened me up, I was covered with endometriosis. It had started spreading to different organs. The doctor put in an IUD, another form of birth control inside my uterus which was normal protocol for endometriosis. Having the endometriosis areas removed improved my pain but a year later I still had pain. I am on a high dosage of birth control and do not have periods, but it only helps the pain a little bit.

Though I still have pain, I continued to run. My dream has always been to follow in my father’s footsteps and run in college. I continued to push through the pain even though it got worse.

I ended up going back to the gastroenterologist because I was having a hard time eating, having regular bowel movements and the pain was severe again. I was diagnosed with Irritable Bowel Syndrome (IBS) with Chronic constipation. I am on medication for this, but it does not improve the situation. I didn’t let this stop me from fulfilling my dream. I worked through the pain and became a collegiate runner. I was so happy to have finally made it, but it was going to be a long difficult road ahead of me.

During my freshman year of college, I was doing better from the pain until mid-season when I started having extreme pain and noticed I was gaining a lot of weight. I understand the freshman fifteen, but this was different. I was running fifty miles a week but still gaining weight. I went to back to the gynecologist to find out that the IUD was causing me to gain weight and have ovarian cysts. I decided it was time to have the IUD removed. I had to be put under to have it removed because it was too painful to be awake. I also have never been able to use tampons, so the insertion process has always been unbearable. I thought I was weird because I couldn’t use tampons the way my friends could. I got the IUD removed right before my sophomore year of college and was back the on pill.

I was still having pain though. I kind of got used to always having pain that I hid it away, so no one could ever tell what I was going through daily. Every year before the season starts, we must get physicals done and my sports trainer pointed me in the direction of a pelvic floor dysfunction therapist. I had never heard of pelvic floor therapy, but I was willing to try anything. It was something new and it turned out that I was diagnosed with pelvic floor dysfunction which is the inability to control your pelvic muscles and the therapy seemed to help all my conditions.

Now I am at six different chronic illnesses and I couldn’t possibly think I could have anything else wrong until I noticed that I had a hard time releasing urine. In my junior year of college, I noticed I never had the urge to urinate and it was causing extreme pain and puffiness in my body. I was retaining urine but drinking around fifteen bottles of water a day. I went to see a urologist, who ran scans and urodynamic tests. The results showed that I had pelvic floor dysfunction which I already was treating. So, the urologist decided to put me under and do a cystoscopy with hydrodistention. She was looking for Interstitial Cystitis (IC). IC is s a chronic condition causing bladder pressure, bladder pain and sometimes pelvic pain around bladder lining. The procedure showed that I have IC and my bladder lining had tears in it.

After the procedure, I was doing the best that I have in six years. It felt good to only have mild pain. I had hope that things were getting better. I was prescribed Aloe Vera pills to help thicken my bladder lining.

But the pain returned, and no one knows how to help because there is not enough information out there.

I suffer from endometriosis, but I also have a nerve entrapment, ovarian cysts, pelvic floor dysfunction, chronic IBS with constipation, colon spasms, gastritis and interstitial cystitis.

I suffer from severe pain daily that hinders my way of living.

All my issues stem from endometriosis. It has changed how I live and makes it very hard to be an average twenty-one-year-old.

I, like so many other women, suffer from an illness that gets overlooked every day.

Even when they find out what is wrong, there are barely any ways to help.

Endometriosis is incurable, but I hope one day my story and all the other stories out there will bring awareness and the importance of trying to find a cure for endometriosis. As a designer, my goal is to spread awareness so that women voices can be heard so that we can find a real solution for our real pain. My journey is not over but I keep fighting so that one day my pain will be gone.

*

If you wish to contact Aly, you may email her here.

I want to send a special Thank You out to Aly for being brave enough to share her personal story, struggle, and victories with us today.  I am so grateful that you continue to fight and look forward to helping you with your project!    Thank you!!!

 

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And if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Feel Good Fridays

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Brandy, Lisa, myself, Jessica, and Heidi. Sisters! ❤

So, it’s Friday. Again. Already.

Last Saturday, a few of us EndoSisters gathered from around Southern California and met up at a cabin on Palomar Mountain.  It has been months in the making.  And it was just an overnight getaway.  And it was wonderful. Lovely. We laughed. We cried.  We ate. We drank. We played cards. We bared our souls.  We bonded more than we already had.

It

Was

Epic!

Such an incredible group of strong women, all courteous to one another, all thoughtful, all compassionate and truly family.  And it hit me as I dropped off Heidi at her house and headed to my tattoo appointment:

I grew up with two older brothers.  My sister passed away shortly after birth, so I’ve never had one.  Rosie is the closest thing to a sister I’ve ever had…I used to mourn the fact that I didn’t have a sister.  And I realized driving away…that I now have millions.

I love you gals. So much.

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Thank you Brandy, Heidi, and Lisa for the photographs! And thank you Jessica for opening up your cabin.   I cannot wait to do this again!  You’re family, you’re my strength, and you’re my hope.  And I know that we will always be there for one another.  I love you all.

And if you’d like to stay at a cabin getaway on Palomar Mountain, the cabin is an AirBNB.  We loved every nook and cranny. Check it out here if you’d like to give it a go.

Blogs I Updated This Week:

Can Men Get Endometriosis?  – added a Sept. 2018 study of two men who developed testicular masses that turned out to be Endometriosis.

2019 Endo Events Around the Globe

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Hopefully you can find an event near you; just click on the title of the event and it will bring you to more information.  I’ll add to this as I find new events! If YOU have an event you’d like me to add, please email me here.

United Kingdom:

Birmingham – May 25, 2019 – EndoBall 2019

Brighton – April 14, 2019 – Brighton Marathon 2019

London – March 23, 2019 – Worldwide EndoMarch UK – London

United States:

California; Los Angeles – March 30, 2019 – LA EndoMarch 2019

California; San Diego – March 30, 2019 – Bloomin’ Uterus Endometriosis Awareness & Support Walk

New Jersey; Saddle Brook – March 23, 2019 – 3rd Annual Our Journey 5K for Endometriosis

New Jersey; Saddle Brook – March 23, 2019 – Our Journey Endo Walk

Just a little encouragement

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So, as part of our 2019 Endo Walk, I’m offering the opportunity for our attendees to say something about Endo on their name badges…and if I can share those blurbs with the world.

So, you’ll be seeing them shared from time to time…and here’s the first.  She didn’t write it, and we don’t know who did…but it’s too awesome not to share.

Gain strength from it today. And tomorrow. And the next day. And the next……..

 

An addition to my Endo Tattoo

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Many of you already know I have a large tattoo on my left shoulder, which represents my journey after I was diagnosed with Endometriosis in 2014.  And many of you also know that each time I have a surgery because of Endometriosis, I add a blood droplet to that tattoo.  And each time, my best friend and Seester (Rosie) comes to be with me during the tattoo session.

So, this year I not only wanted to add another blood drop but I felt a need to somehow honor my sterility since my fallopian tubes were removed, and with them any chance or choice of continuing our family line.

Knowing I’ll never give him a son or daughter, knowing we’ll never hold them in our arms, change diapers, watch them grow up, all the glorified things that my heart aches for.  About a year ago, Jim and I shot a film project for a friend of ours.  We were parents of a beautiful infant girl, Emily.  And while we weren’t filming, he continued to hold her and just seeing him rock her in his arms, coo at her, smile when she made cute bubbly baby noises, smell her head – it filled me to the brim with warm feel-goods.

Although both my husband and I have wanted children at some point during our lives (or shall I say our prior-to-meeting-each-other lives), we no longer felt like we did at our age (I’m pushing 40, he’s pushing 50).  So why couldn’t I stop sobbing?  During my grieving process, I tried to better understand why I was so very upset. Lots of soul searching led me to a conclusion.

Yes, the chance to procreate and to hold our own child in our arms was now gone.  We could adopt, but as I stated above, we truly did not want children at our age.  But if one happened by mistake…we both would have been so happy.  Wait…I’m digressing once more. I already covered that.

So, where was I?  Yes, my sterility.  The choice to remove my fallopian tubes was made prior to my laparoscopy.  If it even remotely had any chance of ceasing the progression of Endometriosis, let’s do it (yeah, yeah, I know – retrograde menstruation is a sneered-upon theory, but it’s worth a shot).  And even if the decision hadn’t already have been made, my fallopian tubes would have been removed during surgery anyway because of the state they were in.  But…they are gone.  My uterus is a now a sealed tomb that will still continue to shed and bleed and remind me each month that it, at least, is still there and functioning.

Wait…I digressed again.  Obviously, I’m still dealing.  Back to the tattoo…

I wanted something that represented not only my sterility, the end of our bloodline (well, I have brothers, a niece, and a nephew, but I mean the direct bloodline of myself and my husband), and my coming to terms with it, but truly accepting the fact that my illness has robbed me of something I did want so many moons ago…

And suddenly it came to me.  I wanted a lit candle, burnt almost to the point of extinction.  Smoldering.   If you’ve followed my previous tattoo posts, you may remember that my artist’s name was Will Novotny.  Sadly, he passed away last year…I’ve been his client since 2009 and no only had the pleasure of being his client, but of becoming his friend.  And now my choice of tattoo had an even greater meaning: not only am I expressing my sterility and acceptance, but I am also lighting a candle in memory of Will…directly adjacent to the last tattoo he inked onto me.

I wrote my friend, Mia, who is a tattoo artist here in San Diego at the Jade Buddha Tattoo studio and explained what I had in mind.

Mia added the suggestion of the candle being held in the palm of a hand, wax dripping.  Then she expanded on that thought: have it held in my hand.  Our waning existence, mortality slipping between my fingers, and me grasping and accepting that very concept.  It was brilliant.

Then the creative process took off!   Not only did I love the journey, but it was so therapeutic talking about it.  And a HUGE thank you to Rosie for being there to comfort me during the painful 4.5-hour session.  And to Mia for her friendship, understanding, and talent!  This piece means SO very much to me.  It’s incredibly beautiful, seamlessly wound into my existing Endo tattoo, and it’s amazing!  I want to cry even just typing about its meaning and yesterday’s wonderful experience.  Oh, and if you can’t find it, the third blood drop is lingering at the bottom of one of the pieces of dripping wax.

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A smidge of humor 😛

Some photos! You can click on a thumbnail, and click once more on the image it opens and it will open a full-size version.

And here’s a few videos trying to better show the entirety of the piece!  Neither the photos or videos do it justice!

(don’t mind the little peeling flecks all over the tattoo haha)

 

oh…and if you’ve made it all the way to the bottom…here’s my favorite photo taken during the session!  God, this piece hurt so much. So worth it!

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If you’re in San Diego, I highly recommend Mia at the Jade Buddha Tattoo!!!

Feel Good Fridays

 

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Well, here we are. It’s Friday!

On my drive to work today, I thought I had to fart.  Um…nope.  I sharted.  What? I SHARTED!  In my dress, driving 65 on the freeway…

I really should have known better.  My stomach hasn’t been right since yesterday: multiple trips to the bathroom with the squirts, including this morning.  But…I was SO sure!!!

What did I do?  Well, first I scrambled for a small shop cloth in the back of the Jeep and shoved it where it needed to go…all without crashing into the car in front of me or weaving out of my lane.  Then I immediately canceled my plans to pick up a bagel on my way to work. I just needed to get to the office and run to the bathroom and take care of things!

And as I drove, all I could do was laugh.  Loud and alone, I couldn’t stop cackling.  I was nearly in tears I laughed so much.  And it took away the catastrophic trauma I had just put myself through. So, 15 minutes later I arrived and found that it wasn’t nearly as bad as I had imagined. (I’ll burn that shop cloth later)

Which inspires today’s quote:

“Humor can make a serious difference. In the workplace, at home, in all areas of life – looking for a reason to laugh is necessary. A sense of humor helps us to get through the dull times, cope with the difficult times, enjoy the good times and manage the scary times.”  ― Steve Goodier

I hope that you had just a good a laugh as I did.  And are able to find the humor in all things you face that aren’t so funny.

Happy weekend!  Love, Lisa

Blogs I updated this week:

Endo & Liver Function – added a 2018 study of a woman with endometriosis found on her liver.

Have You Seen the Endometriosis Commercials on TV – added a link to the new Endo commercial and updated the info about FDA approval of Abbvie’s new drug

Feel Good Fridays

Bloomin' Uterus

I’ve never struggled to find a quote on a Friday morning before.  But today, after an hour of searching for one that clings to me, I give up.

Instead, I will simply tell you thank you.  Not only for reading what I write, but for being there for me when I need you.  And for being such a huge part of my journey and my healing.

Together, we learn, we grow, we endure.  Your stories not only bring me tears, but joy.  Our struggles (because they are OURS) bring us closer and let us know that we do not fight alone.

The knowledge that there are thousands of women who fight this illness alongside me pushes me forward every day.

The disease has not defined me.  It has given me purpose.  And has given me Family.  And it has done the same to you, dear Warriors.

May you have a wonderful weekend.  And if you need to rest, rest.  If you need to cry, cry.  If you need to shout to the heavens, do so.  And laugh when the joy bubbles up.

I love you. ~Lisa

Blogs I Updated This Week:

Endometriosis & The Appendix: added a 2018 study of a 42-year-old woman with appendiceal endometriosis.