Thank you to everyone for the outpouring of support from my emotional Friday. I’ve received so many virtual and in-person hugs. It’s awesome. You guys are awesome.
I wanted to let you know I’m doing well. I look forward to my meeting with my physician on April 22nd to go over the ultrasound results and have a heart-to-heart talk. And trying to remain positive.
What’s up with the above-photo? I recently developed a roll of black & white film that had been in my camera for the past several months. I couldn’t remember what was on it, but I do have one rule when it comes to my photography: one weird, creative, or special selfie must be taken. It’s often hit and miss as it’s an old camera (a Minolta XG-1 from 1982) as there’s no auto focus…haha, but it always makes for a fun project.
Yesterday I picked up my pictures from the developer here in San Diego. And the above photograph is the very first one in the pile. I had totally forgotten about taking it. Was clueless it was on there. And wasn’t prepared for the flood of emotions that boiled up to the surface. This was taken about a week after my July surgery.
I felt sad, then angry at this relentless disease, then sad again. Overwhelmingly so. But as I stared at the photo while safely tucked inside my Jeep parked in the parking garage in downtown San Diego trying not to cry, those negative feelings morphed into something else: a sense of pride, strength, and courage.
There I was, a week after my surgery: I felt well enough to shower alone. And set up the camera on the bathroom counter, tinker with settings, and cross my fingers hoping it would come out. Unashamed of the broken body that the camera would capture, I stood tall and strong.
And this photograph captured that moment.
My moment.
Our moment. I know that you, EndoWarriors, have stared into the mirror at your incisions, your bandages, your scars, your pain. Stand tall with me.
We can get through this.
All is well.
Regardless of the journey…We are alive, and we are in this together.
Our friend and local EndoSister, Maggie Flood of Sacral Spaces, shared something very uplifting in our support group’s page today and I wanted to share it with you:
Just wanted to share a little piece of my weekend with you guys! I posted this on Insta because I am feeling SO GOOD today after my weekend flair-up, and here’s why: …. I had what I can only describe as a flair-up of some sort this weekend. Is it “autoimmune”? Yeah, probably. Is it from “endometriosis”? Eh, maybe. Is there something wrong with me? No, everything is correct, because the diagnosis nor the label matter. What matters is that something happened, and I knew what it was that set me off. On Friday night I let myself get too hungry before we went to a friend’s birthday gathering at a crappy bar. I felt faint and needed SOMETHING so I ate a piece of a friend’s quesadilla in utter desperation. Fast forward through two days and my abdomen felt like burning charcoals from the inside, the skin all over my body feeling like a bruise to the touch… random shooting pains like electricity through my wrists, fingers, and hips. . Here’s where I can choose to say “life is awful – I can’t even have some cheese without being in pain.” Instead I choose to say, “Life is amazing. My body is AMAZING! It’s BEAUTIFUL how sensitive I am. I’m so grateful that I have a body that can tell me what’s right and what’s wrong.” Only I can experience what I experience. . Instead of forcing myself to do more than I could, I laid on the beach and continued my research on trauma and autoimmune disorders yesterday (how beautifully hilarious and timely). When I felt them I took some moments to close my eyes and allow the electric shocks run through me, felt my body recalibrating. I imagined the sun soaking them up. I felt the cold spring wind. I laughed. I’m alive, and I’m human. This is what I signed up for.
Thank you, Maggie. I oftentimes bemoan the fact that I can’t have this or can’t have that. And I truly hope that your positive body thinking reminds me later that I am grateful for the body I have and the awareness that comes with it.
Maggie will be teaching a class on Navigating Painful Sex on May 19th in San Diego. If you’re interested in joining us, we’d love to have you!
As a few of our attendees talked during our recent walk, it came out that they, as a supporter of someone with Endometriosis, would like a place to be able to continue conversations, ask questions, etc. with each other. Some don’t have Facebook, so we started a Google Group (which will allow you to correspond with each other either via email or a forum online). Feel free to join:
If you’re a mom of an EndoWarrior and want to talk to other EndoMoms, please check out our new email-based Google Group, EndoMoms.
If you’re a dad of an EndoWarrior and want to talk to other EndoDads, please check out our new email-based Google Group, EndoDads.
If you’re a partner of an EndoWarrior and want to talk to other partners, please check out our new email-based Google Group, EndoPartners.
If you’re a supporter (friends or other family member) of an EndoWarrior and want to talk to other supporters, please check out our new email-based Google Group, EndoCircle.
A moment of feeling broken and betrayed while scrubbing the tub
It’s Friday. The end of the week. The middle of April! I hope you’re doing well.
Today’s is a lesson in courage…
Yesterday I had my annual ultrasound; it was my first since June 2018…and I had both the transvaginal and the traditional over-the-belly ultrasounds. My first since my two 2018 surgeries. And I was excited.
Both ovaries were found. Exhale a sigh of relief! I’m always worried one will be hiding (usually my right)…and tucked under something via adhesions. The right was visualized and the image captured on still-frame. The tech moved to do the same to the left ovary. She found it, snapped an image, and:
“It seems you have a little cyst action going on,” she says.
“My left one is known for that,” I reply.
She looks a little deeper and longer. Snaps a few images. “Maybe one of those endometriomas…” she pondered.
My heart sank. “During all my past surgeries, it’s always had one on the left ovary.”
Maybe. Maybe not. But…maybe.
I won’t see my doctor until April 22nd to talk about the results of the ultrasound. I know that I need to wait to hear it from him. I know that I am not in any pain. I’ve not had the symptoms of Endometriosis since I healed from my November surgery. I know that I shouldn’t be dwelling on the “maybe.”
But I cried on the drive home. I tried to cheer myself up with a manicure at the mall. It worked until I was alone again in the car. And I cried again. I walked through the front door…and my husband was there. He immediately scooped me into a hug, “What’s wrong?”
I blabbered about the visit through sniffles and that weird grief-voice people sometimes get after long cries. He led me to the couch, shifted our position so I could more readily smoosh into his armpit and shoulder, and he stroked my head and just let me cry and worry.
He reassured me that I will see my doctor on the 22nd. And reiterated that I hadn’t been in any pain. But also agreed with me that just knowing it may be in my body again, this soon, was disheartening.
“I feel like it’s never going to end,” I remember saying.
We watched a bit of TV together on the couch and I then decided to clean the bathroom. We have guests coming this weekend and it’s needed…and I thought the distraction would be helpful. But in the middle of scrubbing the tub, I broke down again. A good ol’ ugly cry.
I wrote about it in my journal. I went to bed still feeling saddened and betrayed by my body.
And I’m sharing it here. Why?
Today is a new day. Life is full of maybes. And I am NOT in any pain. I may have a regular cyst. Or I may have an endometrioma. But as of right now: I don’t have ANY pain. My doc may likely order another ultrasound in a few months to monitor the cyst. Hopefully it’s just a regular cyst and will fade on it’s own.
While getting dressed this morning, I found my old t-shirt from Lauren Siciliano. On the back of it, it reads, “Endometriosis Awareness. Courage, Faith, Strength & Hope.“
Today I need each of those qualities. And wearing the shirt helps.
Maybe you’re going through something similar today…hold onto that courage, faith, strength, and hope that I know you possess. Cling to it, desperately. Don’t let it go.
On March 30, 2019, a few of us got together to support one another and walk together for Endometriosis awareness. This year we had a total of 275 attendees! Two Hundred Seventy-Five!!!! You guys – that’s insane!! I’m still so very excited! If you weren’t aware, this year we gathered once more at NTC Park at Liberty Station.
This was our first year where we actually had amplified sound (thanks for the generator, Todd!). So, we had a welcome speech, and several EndoSisters and their support came up to say a few words. The microphone was made available to anyone who wished to say a few words. Wonderful stories, thanks, and advice was shared.
Photo by Richard T. Reyes
Photo by Compass Media Productions
Photo by Compass Media Productions
Photo by Compass Media Productions
Photo by Compass Media Productions
Photo by Compass Media Productions
We also had some beautiful posters up on display:
Infographic re: Endometriosis by artist Sarah Soward; photograph by Compass Media Productions
Infographic re: Endometriosis on a few San Diego Endo Sisters by Bloomin’ Uterus (from 2018); photograph by Compass Media Productions
We also had a fun little temporary tattoo booth this year. We’d totally like to do this again! I was assured by the manufacturer that there was no latex in the tattoos, but someone had a small latex-allergic reaction. So sorry about that!
Photo by Compass Media Productions
Photo by Richard T. Reyes
Photo by Vanessa Alarcon
Our walk was a one-mile trek around the park, which ended back where we started. Many stayed afterward to enjoy lunch together on the grass in our perfect San Diego weather. It was wonderful. The whole damn day was wonderful.
Photo by Richard T. Reyes
Photo by Richard T. Reyes
Photo by Compass Media Productions
I cannot amply express to you how wonderful it is to be surrounded by fellow EndoWarriors. And their family, friends, and support networks. There was SO much yellow! So many smiles. So many tears. We are all family. And we are all in this together. And just knowing that, seeing that, FEELING that with you all present – that is why we’ll continue to do these walks. Always.
FUNDRAISING
We had two running campaigns this year: 1) fundraising for the Endometriosis Foundation of America and 2) fundraising for the expenses of the walk.
And this year we asked for your help to fund the costs of the walk (it cost $1,558.19 to put on this year’s walk). And with the generous support of our donors, 97.5% of our out-of-pocket costs was covered by donations! This truly is OUR walk! THANK YOU!!!!! If any of our readers would like to see a detailed accounting of costs and donations, please contact me. I’d love to share it all with you. 100% transparency here.
A special moment
The beautiful Sister Donatella Soul; photograph by Compass Media Productions
Before the walk started, Sister Donatella Soul took the microphone. She not only introduced herself and described what the San Diego Sisters of Perpetual Indulgence do, but she took a moment to do something incredible for me. Let me preface by saying I’ve known Donatella since 2015 and she’s been a constant pillar of strength for my own Endo journey, and those of others. We’ve become incredibly close and I am honored with her presence in my life. She’s also made it her personal mission to advocate for those with Endometriosis and to raise awareness for this illness. She’s incredible; she’s one of my heroes.
Even sitting her trying to type it out brings tears to my eyes. She recognized my efforts, not only for the walk, but for bringing our community together; gathering EndoWarriors, giving us a place to learn, love, and grow together. I do not do this for the recognition. If you know me, you know that.
But Donatella petitioned the San Diego Sisters of Perpetual Indulgence to give me the highest honor they could bestow upon a non-member: the title of Angel Anne Doe, Keeper of the Flowering Chalice of Power. And the title came with a beautiful certificate, a lovely lapel pin of angel wings, and the best hug EVER.
My hero. My hero did this for me. And I am so honored. And touched.
Photo by Compass Media Productions
Photo by Compass Media Productions
Photo by Richard T. Reyes
ALL THE Photographs!!!
Viewing these photographs may best be done on a PC or laptop as the image sizes are large and loading times may vary. if you SAVE and/or share these photographs, please give credit to the respective photographers.
A HUGE thank you to Richard T. Reyes and Exxes Hauffen of Compass Media Productions. Year after year, you two come back and capture our moments, our hugs, our memories, and our strength; all out of the goodness of your hearts. You’re incredible. And we thank you for it.
Richard has been a huge part of my Endometriosis journey and an incredible part of our little Endo family. He has been photographing our EndoWalks and gatherings for four years now and we are blessed to call him friend. ❤ Richard shares three galleries of photos with us today: a group photo, the pre-walk gathering , and the walk itself. Not only is he an incredible photographer, but also a wonderful artist! You can follow him on Facebook and Instagram.
Exxes Hauffen of Compass Media Productions is a good friend of mine, too. We met a few years ago as he was the videographer for our wedding. And we kind of bonded over various interests and now he’s stuck with me. Exxes has also streamlined the “Stronger than Endo” project, making it possible for a few of us EndoWarriors to share our stories, as well as spread awareness of the illness. The full interviews of each participant will be released later this year. Exxes donates his time, skill, and passion to our walks as a photographer. You can view the Title page for our EndoWalk photographs, or follow the page directly to Endo Walk photos (while we circled the park) and the Endo Gathering (speeches, arrivals, etc.). If you would like to download any of the photographs taken by Compass Media Productions, please do so before July 11, 2019. If you’d like to view the high-res version of our group photo, just scroll back to the top and click on it; it will open in a new window.
There are several videos and photographs that our walkers have shared on their Facebook pages. Many of which were tagged in our Event. Please feel free to check our Facebook event page for any posts, photos, or videos as well.
If you have ANY issues accessing these photographs, please contact me.
Prizes
This year we had a game of Endo Bingo (or as some called it, Endo Tic-Tac-Toe) thanks to an EndoWarrior in our BU Crew, Andrea. It was a fun way to get people involved with one another, learn about Endometriosis journeys, or what support people went through.
Our Bingo card! Photo by Richard T. Reyes
At the end of the walk, everyone turned in their Bingo cards and winners where randomly pulled out of a big box. A huge thanks to our prize donors this year:
1. A brand spankin’ new Livia unit! Many gals have found relief from menstrual cramps when using this little device (myself included). It’s a $150 value. Thank you Livia! 2. A gift certificate to Natural Harmony Reproductive Health (I love you Merritt!) for an initial consultation and acupuncture session. A $175 value. Thank you Merritt Jones! 3. A gift certificate to Sacral Spaces for either a 90-minute session of acupuncture OR an introduction to pelvic reintegration work. A $230 value. Thank you Maggie Flood! 4. A gift certificate to Skin & Wax Bar in Poway for some pampering! A $50 value! Thanks Skin & Wax Bar!!! 5. A $50 gift certificate for a service with Hair By Kayleigh Elizabeth in Carlsbad, CA! This woman puts a little bit of color into my life… 6. A $50 gift certificate for a handmade flowered crown by MsFormaldehynde, 7. A foot reflexology session by Youko Hasegawa of Youko Touch.
Bingo prizes! Photography by Compass Media Productions
Volunteers
I would like to take a moment to thank ALL of our volunteers for this year’s walk; whether you were assigned a volunteer role or just stepped up and filled a need. This would not have been possible without your help. Brooklyn, Caryn, Heather, my husband, Kelly, Kristin, Leesett, Marie, Mom, Nicole, Timbrely, Todd, Rosie, Emily, and Kathryn; I owe you so much gratitude. And if I missed someone, please let me know. ❤
I’d also like to shout out to our vendors who made the walk doable: The City of San Diego Parks & Recreation Department for the permit, Debris Box for the trash dumpster, and Safiro’s Sanitation for the port-o-potties.
And if you are a member of our BU support group, you (hopefully) received a keychain created and donated by Sierra Alford. They’re gorgeous! If you didn’t get yours, get in touch with me!
And if anyone would like to volunteer for future walks in any capacity, please contact me.
Memories
As part of our 2019 wrap-up survey to all attendees, I asked people to share their favorite moments. And I share them with you (with permission, of course):
It was a beautiful setting to have the walk. It really touched me to see the other women who are going through the same issues I am. Just being with everyone was my favorite!
My sisters face, smiling enjoying herself, as if nothing was wrong at all, that is priceless.
It was all amazing as it was our first walk and we loved that there was over twice the amount of support people that was lovely.
It’s hard to pick a favorite moment, I love it all. The speeches were great.
The unexpected honor bestowed upon me by Sister Donatella Soul on behalf of the San Diego Sisters of Perpetual Indulgence: the title of “Angel Anne Doe: Keeper of the Flowering Chalice of Power.” I don’t do this for the recognition. Ever. But it was so damn touching and wonderful and perfect. And I need a tissue now just thinking about it. The amount of people who have come up to me afterward, or emailed/texted telling me I deserve those wings, that I am an angel, and also having my surgeon tell me recently that I am an angel sent from heaven for our EndoWarriors – it’s too much. And having one of my dearest friends be the one to give me those wings is priceless. Surrounded by my friends and family? Even moreso. It is my honor, privilege, and joy to bring us together, and I love our little family. Thank you.
Group picture.
Meeting all my endo sisters and seeing all the amazing supporters we had there.
Hugging my sisters!
Lisa’s tutu!!! So fluffy & squishy.
The walk.
Lisa getting Angel wings!
The whole thing from beginning to end!!
Supporting.
The talks before the group picture, made me cry and touched my heart!
Watching everyone get big hugs.
Seeing how much the walk has grown. Loved the breathing and stretching before hand. And listening to the fellow speakers.
When the Sisters of Perpetual Indulgence made Lisa an Angel.
All of them.
Donatella’s speech.
Opening remarks.
Lisa’s being initiated into the Sister’s of Perpetual Indulgence. (I’m not crying, you’re crying).
Being able to see the community and come together.
Just seeing other sisters that are in the areas seeing that I am not alone.
Meeting new people!
Speeches before the walk, my husband loved [Lisa’s] husband’s speech!
When I was able to thank all the beautiful endosisters, Lisa, and my family for their love and support through my journey. I also would say it would be making a new friend. Caryn she was so friendly and awesome!!
The walk.
We look forward to many more memories ahead.
Snafus
Like any event, we had a few snafus, hang-ups, and mistakes. We will always strive to get better and better each year, but this year’s were a bit fun. Thanks to everyone who submitted feedback surveys!
There were two sets of port-o-potties this year! What?!? And one you couldn’t even get into! Well, it turns out the set closest to the City restrooms belonged to an event that was scheduled for March 31, 2019; the next day. They had their Blue Rooms delivered early (much to the surprise of the City representative who was present), and placed the portos in a fashion to where they could not be accessed by anyone. This caused a bit of confusion among several attendees. Our two lonely port-o-potties were further down in the parking lot surrounded by yellow cones. If you had the pleasure of using our porto’s, they were so immaculate and clean! OMG!! I’ll use Safiro’s FOREVER!
The park has a weird “no signs” rule. I’m going to talk to the City representative for next year because there were a few other events going on in the park that morning and having a big ol’ yellow sign would be helpful to directing traffic to the appropriate field. We’d also like to have signage for the Tattoo Parlor, Check-in, and the Medical area to better point out these fun little stations.
The event started at 11:00, but the walk didn’t head out ’til about 40 minutes later. There were games and speeches and stretching between check-in and walking. Some people weren’t able to stay due to tight schedules…so for next year we’ll be releasing a schedule of events. (Why didn’t I think of that before?!?!)
I’ve received such wonderful feedback about our check-in volunteers. Check-in, I understand, was a bit confusing because it was by first name this year. In year’s past, it’s been by last name. So please expect to register with mandatory last names in future events. Also in the future, if you register for multiple people, you will have the option to pick up everyone’s badges when you check-in .
Every year we learn. And every year we put new ideas to work. And, again, thank you to EVERYONE who submitted feedback. If you have any other ideas on how we can continue to improve our walks, you can email them to me at any time.
What’s next?
So many things!!! I’ve never been one to just have a walk once a year and leave you Warriors stranded for the rest of the 364 days. We do stuff often!
We meet once a month for a face-to-face support group meeting. We’ve got one on April 14, 2019, and another on April 27, 2019.
We hold workshops as often as we can arrange them with professionals! We’ve got the May 19, 2019, Navigating Painful Sex workshop by our very own Maggie Flood coming up!
In June, my excision surgeon Dr. Mel Kurtulus and I will be presenting about Endometriosis to the Exceptional Family Member’s Program at the Marine Corp. Recruitment Depot.
A workshop about Pelvic Floor Therapy and Endometriosis is in the works.
A workshop about the emotional affects of Endometriosis (and how best to handle it) is also in the works.
Planning for 2020’s walk is already underway. Again, if you’re interested in volunteering please contact me.
We’ll be putting together separate online forums for moms, dads, siblings, friends, and partners of EndoWarriors to email each other to discuss tips, tricks, suggestions, share stories, and support one another.
Have an idea for an event, workshop, etc.? Let me know!
Again, thank you to everyone involved in our 2019 walk: and this goes to volunteers, photographers, and attendees. I’m still flying high, even several weeks later.
Do we have any Oklahoma EndoSisters? We have a blog reader who lives in Idabel, Oklahoma who is looking for Sisters to connect with. Not only connect with you via email, but also either find a support group nearby or start one!
If you’re anywhere near Idabel, Oklahoma…or in Oklahoma ANYWHERE…or want to connect with this EndoSister in Oklahoma, please drop me a comment or send me an email and I’ll connect you. It’s never good to feel alone in your area…
Today’s quote is about personal growth and forging ahead. It’s a poem by Roy T. Bennett titled “Don’t Just.” And I love it. Take it to heart. And do what you can. Have wonderful weekend and I’ll see you guys next week. I hope to have time to blog about our walk next week! An army of Warriors!
Don’t just learn, experience. Don’t just read, absorb. Don’t just change, transform. Don’t just relate, advocate. Don’t just promise, prove. Don’t just criticize, encourage. Don’t just think, ponder. Don’t just take, give. Don’t just see, feel. Don’t just dream, do. Don’t just hear, listen. Don’t just talk, act. Don’t just tell, show. Don’t just exist, live.” ― Roy T. Bennett, The Light in the Heart
My 4th Endo Excision Surgery: updated the billed costs of surgery since I received Assistant Surgeon bills for both the Endo excision and the colo-rectal surgery. The total billed for my entire November procedure is $235,429.60. Insurance paid their shares and I’m (so far) zero out of pocket, other than my $2,250 co-pay. How do people do this without insurance?!?
March is done and over with. And man was it stressful! I can’t see myself EVER fitting in two big Endo events in March…too much planning, not enough energy! 🙂 But it was MARVELOUS!
AND to make March even better? It was 99.9% pain-free! My period even snuck up on me (again!) – no cramps, no pain. Just suddenly…I’m bleeding! And it remained pain-free during it’s 6-day duration. I did, however, have that sudden and severe butthole ache many of us may be familiar with. Out of nowhere and gone in a few minutes – but it was enough to take my breath away and make me stop typing.
I had a bad episode of food poisoning, which led to a sick day from work and a bit of painful sex (before the food poisoning symptoms started). And later in March learned my lesson the hard way that I can’t drink dark beers. It was quite a poopy month. And I did take two Ibuprofen on March 30th after our Endometriosis Awareness Walk – I was just sore and stiff, but not Endo-related pain.
If you’d like to track my daily symptom and food journal, feel free to scroll through each day:
And if you’re intrigued by my bowel movements, here they are! I’m super-duper-pooper excited to share that there were ZERO painful bowel movements. Just a LOT of diarrhea – oh food poisoning and dark beer…kept my March interesting to say the least. It taught me the VALUE of tracking my food and drink: I can go back and scroll through the day prior (or even the morning of) to see what may have triggered my liquid-poo).
I’m still so very pleased with my progress since November’s excision surgery and bowel resection. And am truly hoping this lasts. Forever. We shall see!
This one goes out to all of you who may be struggling with…well, anything.
“Who cares if plan A, B and C didn’t work, there’s a whole darn alphabet!” ― Haleigh Kemmerly
Never, ever, ever give up. Whatever it may be. Always keep pushing.
Have a glorious weekend! Love, Lisa
Blogs I Updated This Week:
Dungeons & Dragons & Donuts: added Chapter 21 (our November 2018) session and reformatted the page to make reading it a little easier.
Endometriosis & the Appendix: added a March 2019 study of a woman who went to the hospital because of bloating, right-sided abdominal pain, nausea, vomiting, and fever. Guess what they found?
Endometriosis & the Lungs: added a March 2019 study of a woman who coughed up blood during her period. Her surgery, diagnosis, and prognosis await your prying eyes!
